History

Friday, August 28, 2009 4:03 PM CDT

Many thanks to all for the outpouring of love and support you provided us in the past few days.

Several people noted that the "Lori and Julia" show on 107.1 was talking about Kate Wednesday afternoon. Her friend, Erin Erickson, also has a show on 107.1. Her show is called "Good Enough Moms" and Kate will be discussed on Sunday. The show is on from 1-2. Be sure to tune in.

I'm taking my baby boy to college tomorrow, but when I get back, I'll post the reflections that were given at Kate's service.

Stay safe and hug your sisters.

Maria

Sunday, August 23, 2009 11:25 AM CDT

NOTICE: stories about Kate will be shared at the visitation at 6pm. We forgot to put it in the obit. Please spread the word!

THIS HAS BEEN UPDATED WITH THE SERVICE INFO>>>

Kate has taken her sense of justice to a new level. Just think of the action she can take now that she is in her new world! Kate's soul took flight at 11:00 am today. She was surrounded by Brett, Mom, brothers, sisters, nephews, nieces and friends. She kept true to her word that she would never give up. She fought hard to the end although she appeared to be out of pain and at peace. She just would have preferred to stay with her boys.

Thank you for all your prayers and messages. The love that has poured out from this site and all of you has kept us going.

We will provide service information when we have them figured out. Hug your sisters.

Love you all,

Maria

OBITUARY:
Kathryn Rae Hunt Mortenson, 37, died peacefully at her home August 23, surrounded by her family and friends. She was known to everyone as Kate, the person who was always there with a smile and a word of encouragement. Strangers took to her. Friends leaned on her. Coworkers confided in her. Her family adored her. Yet nothing made her shine as much as the love she had for her husband, Brett, and 5-year-old son, Grant. Brett, Kate and Grant shared the kind of life and love usually reserved for storybooks.

Kate spent four-plus years battling a very rare cancer, teaching everyone who met her, including hardened oncologists, what it means to never let illness rob you of your passion for life. The cancer would eventually take over her body, but never her mind. Kate shared her battle through CaringBridge that drew many hundreds of people to her story. Many who never even met her, followed her story (and her lessons) daily. Her mantra was simple and direct: "show up," be there for others. In the end, others were there for her. On the day she died, her website (www.caringbridge.org/mn/katehuntmortenson/index.htm) received its 500,000th hit.

Kate was born in Brainerd on March 2, 1972, attended high school in Moorhead (1990), and graduated from the College of St. Benedicts (1994). She was proud of her work at Merrick Food Shelf, as feeding the hungry was her passion. She also worked for ADP for 8 years, rising to serve as sales director. She left the profession to start a family and begin a new journey in her life. That journey took a twist with the diagnosis of cancer, but was never derailed. Every day she fought to "show up" for her son, her family, and her friends.

Kate is survived by husband Brett Mortenson, son Grant, her mother Jeanne Hunt of Nisswa, and her seven siblings and their families: Steve and Sandy Hunt of Burnsville; Thom Hunt and Kathy Ingbritsen of Viroqua, Wisc.; Paul and Lynn Hunt of Pine River; Neil Hunt and Tori Heide of Nisswa; Maria and Tim O'Phelan of St. Paul; Joe Hunt and Julia Sopalski of Oak Harbor, Washington; and Sarah Hunt and Kurt Liebert of Seattle. She has 16 nieces and nephews. Kate also loved and was loved by the Mortenson family: parents David and Barbara Mortenson, and siblings Andrea Mortenson and Nate and Heather Mortenson.Preceding her in death were her father, Norman Hunt; nephew Kyle Hunt, and niece Hannah Hunt.
Visitation will be Wednesday, 4-8 pm at Washburn-McReavy, 2300 W. Old Shakopee Rd, Bloomington. Visitation will also be held at the church one hour prior to the funeral. The funeral will be Thursday, 1 p.m. at Mt. Olivet Lutheran Church, 5025 Knox Ave. S, Minneapolis. Please bring canned or boxed goods to the visitation or service for donation to Second Harvest food shelf. In lieu of flowers, donations for Grant's education or Second Harvest will be accepted.

PARTIAL:

Kathryn "Kate" Hunt Mortenson

Kathryn Rae Hunt Mortenson, 37, died peacefully at her home August 23, surrounded by her family and friends. Kate is survived by husband Brett Mortenson, son Grant, mother Jeanne Hunt of Nisswa, and her seven siblings and their families. See Tuesday's paper for full obituary or www.caringbridge.org/mn/katehuntmortenson/index.htm

Saturday, August 22, 2009 10:45 PM CDT

Kate's most cherished moments always revolve around family in one way or another, and she particularly loves when the family gathers close while her brother, Joe, beautifully strums the guitar while leading the rest of the clan in chorus.

Today was another of these moments. Surrounded by those who love her most, Kate rested comfortably as we sang, cried, and recalled all our cherished moments with this amazing woman. I can best describe it as both gut-wrenching and beautiful, as we damned the situation but took solace in the fact that in one way or another, she was cheerfully humming the melody right along with us.

Please continue with your thoughts and prayers, encouraging a peaceful ride as she moves forward on her journey.

Kate, I love you endlessly with all my heart.

Your nephew,

Conor

-----------------------------------------------------------
Kate has also planned for this time and asked me to pass along some important information for Grant's sake. Being a fierce advocate for Grant always....

Here is what she wants you to know, and I will quote her where she left instructions in writing.

1. Please don't say "She is in a better place." Here is what Kate says about that: "Grant, There are many books out there to help kids and young people with their grief. I want you to know that many books suggest that I will be in a better place once in Heaven. Whil I believe Heaven is a great place, I would always choose to stay here with you and your Dad. I never want to leave you - you are my pride and joy. I don't want to leave this early in our lives." Instead, say she is in a good place and at peace.

2. Don't say she is just sleeping. Kids Grant's age often will become afraid to go to sleep, thinking they will die too. Instead, say she had died and her body no longer holds her spirit. She will live forever in his memories of her and he will always feel her in his heart.

Saturday, August 22, 2009 10:40 AM CDT

Kate continues to progress on her journey. She is actively dying and doing it with the same grace and purpose that she fought to live. She is in her own bed, surrounded by her family. Yesterday, she was able to pull to the surface to smile and squeeze the hand of each new family member as they arrived. She truly gave us a gift yesterday as she interacted with each of us as we said our good byes. She is resting comfortably today.

Kate has also planned for this time and asked me to pass along some important information for Grant's sake. Being a fierce advocate for Grant always....

Here is what she wants you to know, and I will quote her where she left instructions in writing.

1. Please don't say "She is in a better place." Here is what Kate says about that: "Grant, There are many books out there to help kids and young people with their grief. I want you to know that many books suggest that I will be in a better place once in Heaven. Whil I believe Heaven is a great place, I would always choose to stay here with you and your Dad. I never want to leave you - you are my pride and joy. I don't want to leave this early in our lives." Instead, say she is in a good place and at peace.

2. Don't say she is just sleeping. Kids Grant's age often will become afraid to go to sleep, thinking they will die too. Instead, say she had died and her body no longer holds her spirit. She will live forever in his memories of her and he will always feel her in his heart.

This is hard to write so I'm going to stop here for now. I will give you more information later.

Love,
Maria

Friday, August 21, 2009 10:13 CDT

Dear ones,

Thank you for your prayers and thoughts. Kate is more comfortable and was even able to say "Good Morning, Sunshine" to Grant when he came in her room this morning. While the drugs keep her from much else, we are grateful for her comfort. Sarah and Joe will arrive from Seattle today, so the family will be together. In case you didn't already know it, Brett is amazing in his unwavering love and care for Kate. He is also diligently tending to Grant to make the situation as easy as possible for him.

The entries are being read to Kate and truly help her realize how loved she is and how much she has influenced other's lives. Keep them coming!

Love, Maria

Thursday, August 20, 2009
Hello to all

Kate has entered a new phase. The amount of drugs it takes to keep her comfortable pretty well snows her. If she doesn't have enough, it is unbearable to watch her. The pain is unfair, unneccessary and unwelcomed. As hard as it is to have to limit interactions with her, we'd all rather hold her hand while she sleeps in peace than see her in that kind of pain.

At this time, we are not accepting any visitors other than family. We will continue to read your Caringbridge entries to her as she does hear our conversations.

Pray for lessened pain and serenity.

Love you all,

Maria

Monday, August 17, 2009 10:42 AM CDT

Hello to all...Finally, another update.

Kate is continuing to keep us on our toes. On Friday, she had a blood transfusion which always ends up being an all day event. Bex stopped in to pass some of the time, which was a very welcome distraction. Those two have definitely seen it all together, as they have been friends since grade school.

Kate's back on oxygen as her levels continue to go up and down. Her platelets are also going up (when she gets a transfusion) and down (usually two days later). The biggest concern is her pain level, as her tumors continue to intrude unwelcomed into her bones and lean against her organs.

We have reached the unpopular decision that we must limit visitors at the house. She loves everyone so and is such a social butterfly that she wants people around her all the time. The truth is, though, that is really wears her out. We need to conserve her energy for Grant and Brett, so we ask that you not stop over unless it has been scheduled and to limit visits to 15 minutes. We aren't saying stop coming, just that we need to control it a bit. Kate is so concerned about this message because she wants everyone to know how much they mean to her and hates not being in a position to hold court all the time. She loves nothing better. Between her friends and family, though, she has been getting 6-10 visitors each day, which doesn't give her enough down time.

Cards and CaringBridge entries are most welcome and can come anytime!

Grant and the neighborhood kids decorated their bikes and had a parade on Saturday. Kate's been pushing for the event and it finally happened (Thanks Ben and Rachel!). Sam, who lives up the block, made some awesome signs and fun was had by all. Kate was able to sit outside and take pictures throughout, cheering everyone on. The heat drove us all in fairly fast but it was fun while it lasted.

Love to all,
Maria

Monday, August 10, 2009 2:57 PM CDT

Wednesday: Kate's port replacement went fine...except they couldn't put in a new port. They ended up putting in a PICC line which is a less permanent version of a port. Will still do the job, just will likely have to be replaced sooner than a port would have been. It delivers the goods (meds) though so all is well.

Just a quick update...Kate wants to write more later.

It's been an eventful week, once again. Last weekend, Kate's heart rate dropped while her BP went up. After running some tests they found out that there is a tumor pushing on the artory that comes out of the heart and one leaning on the left atrium. (Again, a reminder that I am not the technical one so excuse spellings, etc.) That is the portion of the heart that controls heart rate so it appeared to cause the "episode". It has been more normal this week with little spurts here and there.

We also found out that her port is popping out. We need to get a new one put in, as she is REALLY fond of the port (it delivers the pain meds). She is scheduled to get a new one tomorrow but first needed to get platelets every day so she can handle the surgery. She is doing great on that and her numbers were pretty high as of yesterday, so we are on schedule.

The team is playing around with her pain meds due to a concern that some of her symptoms may be due to a developing toxicity to one of them. So far, so good on that front.

Lest you think that anything can keep this girl down, I need to tell you she is still running the show, enjoying watching Grant and the neighbors romp in the pool and holding court from her lawn chair.

She, Brett and Grant are excitedly getting Grant ready for his first day of Kindergarten (August 31). Grant seems pretty non-chalant about it, but it's pretty exciting for the rest of us!

More to come. Many positive thoughts and prayers for tomorrow please that we may have a very uneventful new port installment!

Love to all... and hug your sisters.

Maria

Saturday, August 1, 2009 11:17 AM CDT

Another eventful week. The good news is that Brett was able to pull the triger at the final hour and is driving to his class reunion as I write. The great news of the week is that KJ had a pretty good first week of chemo and managed the side effects extremely well. She was released from the hospital yesterday and has a 2 week break before she returns. Thanks for writing on her site & keeping her in your heart & prayers.

As for me, it was an ok week. I was sick many mornings which doesn't help the rib cage much. I fractured another rib on my left side but it was very small. It only hurts when I get sick, laugh, hiccup and move - kidding about the moving. My platelets dropped to 12 and my hemoglobin went down from 10.5 to 7.5 in one day. I had an infusion yesterday and they are checking my counts again today out of a mild concern that I may be bleeding somewhere internally which would explain the drop in hemoglobin.

Grant is spending the night at Brett's mom's lake cabin and Karin is coming to spend the night with me. All three of us woke with enthusiasm about our plans! When Karin offered to stay, I called her to make sure she knew how much work I can be due to med's etc.... I explained what type of help I would need including walking me to the bathroom at night should I need it. I then told her, although it is embarrassing and no one knew this problem except family, that she would have to wipe my rear end if I need to go to poop. Karin was so gracious about it and quickly agreed to help me with wiping my butt. I laughed so hard I thought I would break another rib!!! I finally told her that I do not need help with my bum and I was only joking! She was releived but more than happy to help if I needed it! What a great friend!!

Grant is doing great. He is thrilled to go to Gma Bop's. Brett called me from the road to tell me about the converasation he had with Grant:
Grant asked, "If Mom gets too much blood, does she have to give it back to the nurses?"
Brett explains no and begins to "dumb down" the conversation about the size of blood cells and how an infusion works. As Brett struggles for words, Grant says, "Oh. You mean microscopic."
He doesn't miss much!

I hope you all have as much enthusiasm for your weekend as we do ours. Great love to all of you.

** 15,000 more hits and we will have 1/2 million hits on this site!
Kate

Monday, July 27, 2009 8:57 PM CDT

Today is KJ's first in-hospital chemo. round. She will be in the hospital for five days and then take a break. She will do this for three sessions. She is a brave, beautiful & courageous! Please take a moment to visit her site and give a quick hello on her guestbook. It is so fun to hear from people, especially when you are an inpatient in the hospital. Thanks so much for doing this for us!

My lungs continue to improve! Hooray! My platelets held well last week and were up to 49. Unfortunately, they dropped to 22 over the weekend but that isn't too bad. Brett has his 20 yr. class reunion (OLD!), I'm not well enough to make journey accross the prarie to MHD but with my feeling better, we hope Brett will go w/out me. He has earned the time off!

Scan in 6 mths, blood work 2x per week and the rest will vary by day. Still getting physically ill which must be from the Sutent. As long as the Sutent is working, I can deal w/the side effects.
Enjoy the gorgeous weather! Great love to all of you,
K

Monday, July 13, 2009 10:35 PM CDT

*** Wednesday, July 22 Quick update
I received 40 mg of steroids via IV in hopes of calming the stomach storms. It should have stopped me from getting sick for at least a few days but was a dud. I am taking daily steroids again which we hope is helping. I have been sick nearly every day, including at 3am.this morning.
We do have some GOOD news finally! I was admitted to the hospital just prior to the 4th because my O2 levels were down to 74. They told me that it is the mets. in my lungs causing the breathing issues but gave me heavy antibiotics just in case. Well, this week my nurse tested my O2 levels without using O2 machines and my level was at 92! It is very possible that I did have some sort of infection in my lungs that were causing the breathing issues!! There are still plenty of massses in my lungs but as long as they aren't impacting my breathing abilities, that is ok. We see the Doc tomorrow and will update then.

Thank you to all who have written to Katie Jeanne and/or sent prayers! I know how much that means to her and that it is so helpful keeping her spirits up. If you want to send a note of encouragement, her site is listed below. Thanks for all that you do!
Kate
***
Things have been happening at a rapid pace lately and it feels as though we have been frantically treading water to stay afloat. As others have mentioned here, Kate and I renewed our wedding vows 10 years to the day after- in a probable moment of questionable judgment on her part- I was able to lock in her for life. Still one of the greatest moments of overachieving in the history of man. We had so much fun with it and were deeply touched by the turn out on such short notice.
Our wedding day had more than the usual amount of emotion due to the passing of Kate�s father months prior. Our vow renewal had the makings for even more volatility because of recent news that our hope for the success of the new treatment was fading, Kate was unable to take the drug because of low blood counts, she was feeling worse and our recent scan was a mixed bag with more bad than good. But as the day drew closer we found ourselves more and more excited. We had such a great night and writing our own renewal vows to each other truly made it feel that we were marrying each other all over again. Marrying a girl like Kate once is more than I ever could have dreamed of, but twice�.unimaginable.
So, when Kate started feeling increasingly short of breath we were jolted back into reality. We are not strangers to getting bad news but this latest setback left us numb. Kate�s lungs are getting worse. She is moving a little slower these days and has added a portable oxygen tank to her partner the pump. Grant asked Kate recently �how come you get to use oxygen� as if he was missing out on some cool experience. This did however open the door for some more serious conversations with him about what exactly is going on. He seems unfazed by this kind of talk- we have to assume it is because he doesn�t have any other reality other than his mom has cancer and that is all he has ever known. She still cuddles with him watching cartoons, reads books at night, and is the center of his universe. As much as we worry about him we know he is truly blessed with a huge extended family who loves him dearly and with whom he moves freely and seemingly care free. He is our greatest worldly treasure.
As for the elephant in the room, the battle continues. Kate has decided to resume taking Sutent with the mixed approval of her medical care givers. She requires occasional blood tune ups and is slowed by the pain of bone metastisis. Her breathlessness seems to be improving slowly and I can sense some of the restlessness and boredom returning, which -God willing- has proven to be a positive sign in the past.
Thanks to all for the support,
Brett

Thursday, July 9, 2009 6:02 PM CDT

Hello Friends.

I have received many cards which begin with "I want you to know..." Once again, Maria has such great ideas! Thanks to all who are participating! It has been great fun receiving notes from so many.

I didn't write immediately after coming home from the hospital. We found out about my neice just as we walked in the door and I wanted to wait for updates about her first. I have put her caringbridge website link down below. I know she would love a few notes from people if you wish to send her prayers and positive energy. She is an amazingly kind, loving girl who is full of the spirit of adventure!

I had a round of Zometa today to help protect my bones. Time to eat so I will write more later - all in all it has been a better week. Had a great 4th - Hope you did to!
Katie Jeanne's site:
www.caringbridge.org/visit/katiehunt

Kate

Thursday, July 9, 2009 6:02 PM CDT

Monday, July 6, 2009 7:41 AM CDT

Monday, July 6 update:
Kate came home from the hospital on Friday and seems to be comfortable now that we have the oxygen routine down. The docs will be back in town now that the holiday is over, so we can start talking about "next steps".
Our 22 year old niece and Kate's namesame, Katie Jeanne (KJ), was diagnosed with an aggressive cancer on Friday. Here is an excerpt from www.caringbridge.org/visit/katiehunt:
"KJ had a tumor about the size of a Nerf football removed during surgery July 1 at St. Joseph�s Hospital in Tacoma. The tumor, known as a teratoma, was wrapped around her right ovary, requiring the removal of the ovary as well. It also turned out the tumor had ruptured days before the surgery. Although 99 percent of these tumors are benign, the news came two days later that KJ had beat the odds, with a malignancy doctors consider aggressive.

The good news? 100 percent of the tumor was removed. There was no sign of cancer in the lymph nodes or anywhere else. Also, aggressive cells are more vulnerable to chemo. This means that KJ will begin an intensive three-month regiment of chemotherapy as soon as she recovers from the surgery (mid to late July). KJ will undergo five days of chemo in the hospital followed by three weeks of recovery. Then repeat three times." (Please go to her site for more info and to send her your proven positive energies. The Hunt Mortenson family is incredibly sick of cancer and want to squash it to the ground once and for all!)

Friday, July 3
It's been an eventful week...
Kate started the week feeling lightheaded but continued to pack to go to Mom's lake for the weekend. Her body had other ideas, though, and by Wednesday her oxygen count was at 74%. It was decided we needed to rule out pneumonia and pulmonary embolism before we hit the North woods. The ER visit turned into a hospital admission.
As you know, I don't do medical terms the way Kate and Brett do, so here is the layperson's understanding of what is going on.
After several tests, it was determined there is no embolism, there is possible pneumonia, and her platelets dropped to 15 but the primary reason appears to be the cancer in the lungs. They are treating her for pneumonia as a caution and she'll use oxygen at home now (she already had it at home and was using it occasionally before). During all the tests, they found an issue with her port, so they are working on that now. The port is very important since it allows her to get her meds steadily throughout the day.
The plan is for her to go home today. We'll continue our 4th celebartion with the family in the Cities and enjoy the weather and each other.
Sarah and Kurt took Grant and Max up to Grandma's cabin so they could get a few days of fishing in. It's been great having Max here as Grant adores him and they have stayed very busy together.
Keep the positive thoughts coming...they do make a difference. Enjoy the 4th and your famiy!

Maria

Friday, July 3, 2009 7:24 AM CDT

Monday, July 6 update:
Kate came home from the hospital on Friday and seems to be comfortable now that we have the oxygen routine down. The docs will be back in town now that the holiday is over, so we can start talking about "next steps".
Our 22 year old niece and Kate's namesame, Katie Jeanne (KJ), was diagnosed with an aggressive cancer on Friday. Here is an excerpt from www.caringbridge.org/visit/katiehunt:
KJ had a tumor about the size of a Nerf football removed during surgery July 1 at St. Joseph�s Hospital in Tacoma. The tumor, known as a teratoma, was wrapped around her right ovary, requiring the removal of the ovary as well. It also turned out the tumor had ruptured days before the surgery. Although 99 percent of these tumors are benign, the news came two days later that KJ had beat the odds, with a malignancy doctors consider aggressive.

The good news? 100 percent of the tumor was removed. There was no sign of cancer in the lymph nodes or anywhere else. Also, aggressive cells are more vulnerable to chemo. This means that KJ will begin an intensive three-month regiment of chemotherapy as soon as she recovers from the surgery (mid to late July). KJ will undergo five days of chemo in the hospital followed by three weeks of recovery. Then repeat three times. (Please go to her site for more info and to send her your proven positive energies. The Hunt Mortenson family is incredibly sick of cancer and want to squash it to the ground once and for all!)

Friday, July 3
It's been an eventful week...
Kate started the week feeling lightheaded but continued to pack to go to Mom's lake for the weekend. Her body had other ideas, though, and by Wednesday her oxygen count was at 74 It was decided we needed to rule out pneumonia and pulmonary embolism before we hit the North woods. The ER visit turned into a hospital admission.
As you know, I don't do medical terms the way Kate and Brett do, so here is the layperson's understanding of what is going on.
After several tests, it was determined there is no embolism, there is possible pneumonia, and her platelets dropped to 15 but the primary reason appears to be the cancer in the lungs. They are treating her for pneumonia as a caution and she'll use oxygen at home now (she already had it at home and was using it occasionally before). During all the tests, they found an issue with her port, so they are working on that now. The port is very important since it allows her to get her meds steadily throughout the day.
The plan is for her to go home today. We'll continue our 4th celebartion with the family in the Cities and enjoy the weather and each other.
Sarah and Kurt took Grant and Max up to Grandma's cabin so they could get a few days of fishing in. It's been great having Max here as Grant adores him and they have stayed very busy together.
Keep the positive thoughts coming...they do make a difference. Enjoy the 4th and your famiy!

Maria

Friday, June 26, 2009 4:29 PM CDT

**I posted new photos. Karin was our official photographer & we will post more when we get hers.**

**Friday addendum: Counts still dropping. Platelets at 21 and Red cells at 8.1. Received 2 units of red cells and one of platelets. Forgot to ask about white cells but they must be ok. If the Sutent is the culprit, wouldn't it be reasonable to assume that it must also still be working on the tumors?**

Hello all -

I always want to start with a "good news" / "bad news" joke but it just isn't all that funny.

Unfortunately, the Sutent is not doing it's job well enough to feel it is helping according to the doctor. He initially told us he is most disappointed by all of the bone lesions, which threw him over the edge from saying it is not a horrific scan, but it isn't good either. The radiologist said that there is significant growth and progression in the sternum, spine, femurs, ribs, both scapulas, jaw, shoulder, pelvis .... There is some better news and that is that they do feel I may have had pneumonia last time and that their may still be some infection - overall, the lungs appear better. The bad news about the lungs is that there are definite nodules that are metastatic.

He said we have 3 options:

1. Once my platlets rise (50 and I am at 23) we will give Sutent another try. I only got in 1 and a half rounds (which after discussion, he did feel better that we haven't given it a lot of time).

2. There may be a new drug trial at MD Anderson. We are sending info. to TX and have them tell us their opinion and tell us if study is ready.

3. Stop treatment.

I am not done fighting and have no intention to stop at this point. We are extremely disappointed by the scan but feel that their is room to do something. I am really unhappy about all the bone involvement but there isn't much to do about that until we get something to work systemically. The doc. did come back a little later and didn't sound as gloom and doom as he did initially.

I still feel better than I did in TX so that must count for something?

Thanks for the positive thinking and prayers. We need it now more than ever so please don't stop focusing on the positive.

We love all of you.
K

Friday, June 26, 2009 4:23 PM CDT

I always want to start with a "good news" / "bad news" joke but it just isn't all that funny.

Unfortunately, the Sutent is not doing it's job well enough to feel it is helping according to the doctor. He initially told us he is most disappointed by all of the bone lesions, which threw him over the edge from saying it is not a horrific scan, but it isn't good either. The radiologist said that there is significant growth and progression in the sternum, spine, femurs, ribs, both scapulas, jaw, shoulder, pelvis .... There is some better news and that is that they do feel I may have had pneumonia last time and that their may still be some infection - overall, the lungs appear better. The bad news about the lungs is that there are definite nodules that are metastatic.

He said we have 3 options:

1. Once my platlets rise (50 and I am at 23) we will give Sutent another try. I only got in 1 and a half rounds (which after discussion, he did feel better that we haven't given it a lot of time).

2. There may be a new drug trial at MD Anderson. We are sending info. to TX and have them tell us their opinion and tell us if study is ready.

3. Stop treatment.

I am not done fighting and have no intention to stop at this point. We are extremely disappointed by the scan but feel that their is room to do something. I am really unhappy about all the bone involvement but there isn't much to do about that until we get something to work systemically. The doc. did come back a little later and didn't sound as gloom and doom as he did initially.

I still feel better than I did in TX so that must count for something?

Thanks for the positive thinking and prayers. We need it now more than ever so please don't stop focusing on the positive.

We love all of you.
K

Sunday, June 21, 2009 8:53 PM CDT

We had an incredible 10th Anniversary celebration of our vows. Flanked by family and original bridal party, the night could not have been any better in my mind (we kept it very small). Brett or I will write more tomorrow but we do want to thank everyone for coming and continuing to surround us with love. A lot of people helped bring this together but a HUGE thanks to Maria for hosting the party and making it one of the greatest evenings of our lives.

We'll update on health stuff tomorrow.

Brett and I had such a wonderful experience writing to one another for our service, it was so fun to focus on our love for each other. Consider doing it for your next date or anniversary - it is well worth the efforts. Much love to all of you.

K.

Saturday, June 13, 2009 9:46 PM CDT

It has been a harder week again filled w/a lot of nausea and getting sick. Hopefully today we have found the right regiment and the nausea will be held at bay.

We have a busy week of appointments. We meet with the radiation doctor Tues. to determine how or if to move forward. I will have my PET/CT on Wednesday and end the week Thursday with Dr. Schwerkoske. I had MD Anderson overnight the last PET from TX so that they can compare it to the one we will do on Wed. This should show if Sutent has begun to work - the drug acts slow so we will be pleased to see stability. Obviously, we prefer regression but stability will bring smiles to our faces as well. We hope to celebrate good news on Friday as well as celebrate our ten year wedding anniversary! TEN Years!! More to come.
Great love to all,
K.

Wednesday, June 10, 2009 8:43 AM CDT

We are now holding radiation until Monday and I am being forced to take a two week break from the Sutent. We have an appt/ at MOHPA today to determine what action we will take from this point. I believe we will scan next week to see how much damage the Sutent has caused to the "c".

I spoke too soon about the nausea issue and its back with a vengence. Thus far in our journey, I have been able to keep my weight close to my normal weight but that has been much more difficult this past month. Hopefully, I will feel like eating again now that we are taking the break from radiation.

We will write more after our appt. today. Go Sutent!

K.

Saturday, June 6, 2009 7:47 PM CDT

***June 8th UPDATE:***
Platelets too low for radiation today. I will take a break until Thurs. am and redraw. I also received a call from MOHPA telling me to hold off on the Sutent until I hear otherwise. Apparently, 18k platelets are too low for the chemo drug as well. Most other counts look OK with the exception of my liver enzymes, protein & calcium levels. These have been elevated before so I am thinking they are off because of all the new drugs my body is try to break down. I should have smoked pot in my younger years --- My body is now trying to figure out how to break drugs down, at least I could have had some fun practicing. ****

The ride continues but we feel as though we are inching our way back up again. I am feeling better and tolerating the Sutent and radiation. I was overly confident about the nausea and vomiting as it had been a week since I was last sick . I decided to lay off the steroids and some med's which was foolish as it led to my getting sick at 4 AM Sat. I will just have to stay on the medications prophylacticaly because anything beats vomiting with broken bones! Is this way too much information for you??!

Grant is really enjoying his summer. There are several kids in the neighborhood who love to play Toilet Tag, Chase the Wild Beast (Tiger)and Sardines as much as Grant does. Grant�s absolute favorite thing to do at the moment is to collect caterpillars or most likely, mothpillars with his buddies, squealing with the joy that comes from having your arm tickled with �over 20 caterpillars�! Life just doesn�t get any better than this! He continues to keep my spirits up and he keeps me fighting. Grant isn�t quite as open with his hugs and kisses in front of friends these days but he still has me wrapped around his little finger. Today he whispered, �Mom. I have a secret. I love you. I just wanted you to know that.� And off he ran with his friend (who he made sure did not hear our secret).

Brett finally got a round of golf in w/his friends. I am hoping he can try to make this an every other week thing or so as he doesn�t get out enough on his own. I wonder if we are the only couple in the world who continuously argue about the idea that the other one is doing TOO much?! We truly argue about these things and it can get heated. I have to step back and laugh about it...most couples argue that the other isn't doing enough. Thank God for the tremendous help we receive from family and friends.

Wishing all of you a great weekend!

K, B & G

Thursday, May 28, 2009 4:15 PM CDT

**May 31, 2009**
Woke up today with 'blonde' eyelashes and eyebrows. I have always wanted go "platinum", just not necessarily my lashes and brows. It look strange w/my dark hair so maybe I'll have to go full-blonde?
Still sick but steroids are making naseau a bit better.
Grant and Brett are doing well - I can't imagine how Brett keeps us going but he does somehow.
Love to you,
Kate

Hello to all,

Kate asked me to update you on how it's going at the Hunt-Mortenson household. It's been busy as we just came off of a weekend that involved birthdays, graduations and ALL 8 Hunt siblings and families. There was lots of food, music, intense discussions and laughter. The weather was very cooperative so we were able to be outside much of the time.

Kate is back on Sutent for round 2. She is also still doing the radiation treatements (8 more treatments). She is having several side effects including nausea, pain when swallowing, fatigue, and general pain from the bone issues. She has decided that it might be a bit much when you have a fractured rib and a raw throat and mouth and then you need throw up. Now she gets the hiccups on top of it. Her appetite is not the best due to the side effects. It can be humorous watching brothers, sisters, mothers and husbands running around making food and drinks only to have her say "nope, not this either". We have found great pleasure in the small things in life like noodles with butter that actually stay down.

Grant was in seven heaven with his cousins, Max and Espen, here this weekend. The highlight of the weekend was when they came home from frog-hunting with a leech! It was not the highlight for the adults in the room!

Thanks for everyone's help and well wishes. This has been a rough period and the extra help is most appreciated.

Love to all,
Maria

Tuesday, May 19, 2009 9:11 PM CDT

We finished my 6th of 20 rounds of radiation today. Julie Sampson took me to the appointment; the plan was to grab lunch and her shoulder to lean on. Instead, during treatment, I began to feel ill and soon began throwing up (again, throwing up w/broken ribs and vertebrae never pair well). Despite this, it was great to spend some alone time with my dear Julie.

Grant has asked several good questions related to my having cancer - it is as though he has read the same books about a grieving preschooler as I so he knows just what to ask. It is too difficult for me to share some of what he asked but I am incredibly impressed with our astute, wise five year old. If I could somehow avoid all of this and ensure he would not be subjected to heart-ache, I would in a moment.

I have to thank all of you who have so generously offered to make meals, take Grant on play dates, to mow our lawn and weed our garden, to hire a professional photographer and so on and so on.... I am sorry to those of you who have not received a written thank you for your act of kindness. I try to do this asap but with everything going on in our lives at the moment, some of the written 'thank you�s' have been lost in the cracks - the acts are not lost on us and will forever will stay in the hearts of Brett, Grants & mine. Thank you.

I hope tomorrow brings another beautiful day - run through sprinklers and as Grant says, "laugh your butts off!"

Happy BDay Mom &Barb! Happy BDay Jaiden & Kelsey! Happy BDay to Steve & Nancy! Happy BDay to Neil, Solee & Jason Bexell! Happy BDay to Cat & Steph! Love you all!

This week, Kelsey will graduate from the U of M Duluth & Coley will graduate from Minnehaha Academy and plans to got to Boston College! Congratulations to both of you! I love you!

Love,
Kate

Sunday, May 10, 2009 10:30 PM CDT

Update: Tuesday, May 12th

*More lesions found in right femur & hip.
*Had first radiation therapy today. Went ok - due to leg issue, I had to have four scans/Xrays each on a different table. It is brutal to get up from a reclined position! Maybe I will design radiation tables for future patients.
*The avalanche is slowing and now we need to push it all back up hill.

Grant has a slight cold so I must keep my distance due to my lung involvement. Brett is an amazing dad - truely amazing.

Wishing each of you the ability to stay in the moment and savor that moment before it slips by.

Happy Mother's Day to all of the wonderful women in our lives!!!

Here is a quick update:
* Quick ER visit last Monday because I hurt my back. More med's and more met's.
* Met w/Radiation Oncologist. We decided to do it at Abbott because of vicinity and "mistake" made by last Rad. Oncologist.
* The radiation is palliative only. We need the Sutent to start pulling its weight to kick the "c" to the curb.
* New CT shows metastases in every vertebrae w/exception of the neck. T8 is the most problematic. Unfortunately, it is believed that there is extensive disease in hip, pelvis, back, ribs & sacrum. Despite this, it is the lungs that are most threatening. Once again, the "c" is not for wimps - I almost capitalized "c" on Monday as it deserved some respect...
* We will get bone scan results on Tues. and have first therapy as well. It is expected that we will do radiation every day, Mon - Fri. for three to five weeks. I will continue to take Sutent (& it will work) and the Zometa infusions for the bones.

Most importantly, I was able to go to Mom's Night at Grant's preschool. He was elated!!!! He was so excited to give me the darling clay pot he had made along with some drawings. During the music performance, Grant kept pointing at me, using both arms every time the song said anything about love or Moms. He continues to be my light and there is no doubt that my boys are responsible for my four year anniversary since the diagnosis (I was given 18 mths). I intend to take pictures of him at his prom and embarrass him with my jubilance at his games, performances, meets � whatever he is into (he�ll probably be a nerd like me and be in the Science Club but I will cheer him on there too)! Today however, I am happy that I made it to Mom's night and to Grant's Kindergarten Roundup!

Happy Mom's Day to all of the women out there. I am so fortunate to have an incredible role model in my Mom. I am also blessed to have so many amazing, strong women in my life, making this journey a bit easier.

Love to all of you. Love up your loved ones. Love them & let them grow....
K.

Sunday, May 3, 2009 9:05 PM CDT

As you can imagine, it has been a difficult week. I'm not sure which has taken the biggest beating, my physical or my emotional. All I know is that Grant & Brett, along with my Mom & incredible family are keeping me from completely falling apart - again, both physically & emotionally.

Although I do have a broken rib & some compression fractures in my spine it isn't as bad as it sounds. Thankfully, I don't have cord damage or nerve compressions which means I don't need to worry about paralysis at this time. Tah Dah... See, there is always a silver lining! We are looking into direct beam radiation to help with the pain in the bones but we have to find out if my body can handle anymore radiation due to the mishap last fall. Another option is to inject 'cement' into the bones that have collapsed or about to collapse. We will probably see the experts this week and make our decision.

It is Murphy's law that I have felt reasonably well with the Sutent and now, with a broken rib & back, I am throwing up on a nearly daily basis. If you think throwing up is bad or having a broken rib & back is bad, trying doing them together - it's quite the party! The 'c' isn't for whimps!

Grants radar is fine tuned and sensitive enough to detect the slightest of nuance. He asked me some questions that are too heartbreaking to talk about but I am relieved that he is willing and able to ask so we know what is going on in that brilliant brain of his. He is amazing. Today he had us holding our sides in laughter (another thing that isn't too easy on the ribs). He was rock'n out to the tunes of the Gear Daddies, he didn't know we were watching and was going all out! He is so sweet and gentle with me - definately an old soul. The other morning I was washing my face and said that I looked a mess. Grant turned, looked at me and said, "I thing you look good Mom." "Thanks honey" "No, you really do." Sooooo sweet!

I do ask that you be careful about what you say to Brett & me if Grant is around. I also ask that you be careful what you say to your kids about my illness. We are open & honest with Grant about the "c" but we are careful about what details to share at this moment. His radar is so high and I know that he is paying attention to what poeple are saying to me and how they are reacting. One of our favorite little boys once said to me "Kate, Did you know if you die, Grant won't have a Mom anymore?" Grant was right next to me. It gave me the opportunity to explain to Grant that he will ALWAYS have a Mom because he is part of me and I am part of him. I will live in his heart and memories forever. Nothing else has ever been said but I am a concerned that a child may over-hear someone talking and he or she may share what they heard with Grant. Thanks!

I'm beat and off to bed - we love you and are grateful for all the prayers.

Love to you all,
K

******
Kate may have mentioned that she had an appointment with her doctor on Wednesday (the day after our meeting). At the appointment, Kate's doctor became very concerned about the pain she is having in her chest and the difficulty she has been having in getting a full breath of air.
Thinking that she could have pulmonary embolism (blood clot in her lung), they decided to do a CT scan that afternoon. Although the scan did not show
a clot, it did show that she has some cracked ribs and several compression fractures in her spine.

This, unfortunately, explains both the pain Kate is having and her difficulty breathing. Today (Thursday) Kate underwent a 2 1/2 hour MRI to further explore what is going on in her bones (an MRI is better at looking at bones
than a CT scan which, I understand, is more used to look at the vascular system).

One can only imagine the immense pain that must be associated with several bone fractures, plus the other range of pain and fatigue, associated with
her illness. As we know, Kate is the toughest cookie in the bakery. I could hardly believe she was at Sophia, participated so fully, and was so composed upon hearing about the fractures. The woman has the strength of
Hercules.

We are all to be positive and pray, pray, pray. Send the most positive energy her way that you can. I will update you again after they get the results from the MRI if Kate needs to preserve her strength and can't do so
personally.

WE LOVE YOU KATE! WE ARE ALWAYS WITH YOU IN OUR HEARTS, THOUGHTS, AND
PRAYERS!

Karin

Michele Bachmann Links Swine Flu To Democrats, Gets History Wrong (VIDEO)
http://www.huffingtonpost.com/2009/04/28/michele-bachmann-links-sw_...

Friday, May 1, 2009 9:30 AM CDT

Kate may have mentioned that she had an appointment with her doctor on Wednesday (the day after our meeting). At the appointment, Kate's doctor became very concerned about the pain she is having in her chest and the difficulty she has been having in getting a full breath of air.
Thinking that she could have pulmonary embolism (blood clot in her lung), they decided to do a CT scan that afternoon. Although the scan did not show
a clot, it did show that she has some cracked ribs and several compression fractures in her spine.

This, unfortunately, explains both the pain Kate is having and her difficulty breathing. Today (Thursday) Kate underwent a 2 1/2 hour MRI to further explore what is going on in her bones (an MRI is better at looking at bones
than a CT scan which, I understand, is more used to look at the vascular system).

One can only imagine the immense pain that must be associated with several bone fractures, plus the other range of pain and fatigue, associated with
her illness. As we know, Kate is the toughest cookie in the bakery. I could hardly believe she was at Sophia, participated so fully, and was so composed upon hearing about the fractures. The woman has the strength of
Hercules.

We are all to be positive and pray, pray, pray. Send the most positive energy her way that you can. I will update you again after they get the results from the MRI if Kate needs to preserve her strength and can't do so
personally.

WE LOVE YOU KATE! WE ARE ALWAYS WITH YOU IN OUR HEARTS, THOUGHTS, AND
PRAYERS!

Karin

Michele Bachmann Links Swine Flu To Democrats, Gets History Wrong (VIDEO)
http://www.huffingtonpost.com/2009/04/28/michele-bachmann-links-sw_...

Thursday, April 23, 2009 10:52 PM CDT

Michele Bachmann Links Swine Flu To Democrats, Gets History Wrong (VIDEO)
http://www.huffingtonpost.com/2009/04/28/michele-bachmann-links-sw_...

And somehow, she was elected to represent intelligent voters from the 6th district...

Thanks for the notes and posts on the guestbook. Brett & I are humbled by the care and concern of friends, family and those we have yet to meet.

As always, Brett selflessly takes care of our family and as you probably gathered from his last update, there has been much to do. I know that the new drug, Sutent, is working. I have less pain in my leg and spine and it isn't such a struggle to catch my breath when I am tired. The side effects haven't been too bad. I have been ill but it is mostly controlled. The biggest issue is eating enough to maintain my weight - the Sutent is making my tongue swollen and it feels like I burned the first layer right off! My diet the last couple of days pretty much consists of Dairy Queen cones, fruit smoothies and yogurt. It originally seemed like a dream diet but I am getting tired of it already.

Grant is doing well. We have had some issues since turning five and we are trying to figure out if it is a five year old thing, a "Hunt" thing or a "c" thing. He is still as sweet and thoughtful as ever - with me anyway! The other day he told me, "Mom, even if I met you for five minutes, I would love you right away." How can you have a bad day after being told this??

I am exhausted & off to bed! Thank you to all who continue to support our family and help us protect my energy level so I can focus on Grant & Brett. May 2nd will mark the fourth year of my diagnosis - I am certain I wouldn't be here were it not for the incredible, absolute incredible support we get from family, friends, each other and this site. Thank you.

As always, wishing you great health and wonderful days of laughter with your wee ones.

Kate

Monday, April 13, 2009 10:24 AM CDT

More good stuff from The Daily Show & John Stewart as he takes on the idiotic rantings of Michelle Bachmann. I am not putting the video clip on our site due to excessive profanity, but if you can ignore the language, click on the link and watch the video... It will do your brain some good:

www.huffingtonpost.com/2009/04/08/baracknophobia-hannity-ba_n_184568.html

Good Monday morning,
A quick hit to all of the former spuds out there. I really enjoyed watching the little bit of the Masters that I could sneak in this weekend. Watching Angel Cabrera play always takes me back to the fond memories of running around with his twin and my good friend whom I miss not seeing as much these days: Chad Mohagen. Good times.
Back to reality. Kate has started her new treatment and seems to be tolerating it reasonably well so far. Her frenetic pace has definitely slowed and she is even more of a one hit wonder the last few weeks but she is as beautiful and feisty as ever. We are still perplexed by the increase in pain she has had recently but know that it too shall pass with the amazing response she IS going to have with the new med. She has pulled many rabbits out of her hat so far with this battle and I know she will again.
Kate wanted me to share some of the adventures we had on our most recent and most trying trip to the lone star state. Bullet points seem like the shortest route to chronicle this epic battle so here goes.
-Day one, Hunt Mortenson clan get there in one piece thanks to the generosity of many. Unfortunately my sister, Grants caretaker doesn't. She gets bumped and after spending the better part of the day battling at the airport, gets a one way flight from a different airline late that night when the ticketing person misunderstands her sob story and assumes she is the patient who needs to get to Houston for desperately needed treatment. Whatever works I guess.
-Day Two and Three are long days at MD Anderson and longer ones for Grant and Andrea who spend two days in a hotel without seeing the light of day. First comedic/tragic story: Grant wants to show his Aunt what a great diver he has become. He backs up as far as the pool room will let him, calls for Andrea to watch, and takes off running for the pool. Andrea jumps up and calls for him to stop running on the pool deck. Undeterred Grant reaches top speed and closes his eyes as he prepares for take-off. Feeling the wind under his wings he takes to the air and prepares for splash down. His dream dive is brought to an abrupt halt when instead of breaking the waters surface ever so gracefully, he belly flops on the concrete two feet short of the pool. His trusty swim vest spares all non ego related injuries and when his Aunt reaches him trying to console him through suppressed laughter, our hero walks away with only a scratch on his left wing. Two days later after close observation on her part and no apparent signs of lasting damage she sheepishly relates this tale to us and when I ask Grant how he got the scratch on his elbow he equally sheepishly tells us of his crash and burn.
- Day 5: Kate is really hurting. She began having pain before we left. The injections she is taking to crank up her bone marrow's production of stem cells is making things even more miserable. This drug, �G� (I think they call it this because a few injections of it costs about a �grand� but more on that later), causes intense bone pain at this dose as well as very rare chance of rupturing your spleen. We consider going to the ER but instead our son�s ever devoted mother ops for a trip to the aquarium. Even through unbearable pain, every day has to be Disneyland. Donna (second shift of caretakers) and I carry her out of there a few hours later. She can barely remain conscious but Grant speaks happily to his new stuffed Bengal Tiger from the gift shop. Disneyland.
-Day 6: Hell Day. We start out bright and early at MDA for what is going to be our daily ritual for the next week. Blood draw at 7:30 and then wait for the call to find out if she has enough stem cells circulating to harvest. After the draw and a quick check in with the stem cell team, we are told to go the clinic ER to find out what is causing all of Kate�s pain. Thankfully we are the first people there so anticipate a quick trip. Doc sees Kate right away, X-rays of rib cage taken, a boost in her morphine ordered, things are moving along well. Seven hours later we see the doctor again. He offers to admit us for pain management. We not so kindly decline the offer and walk out of a now packed ER with many patients occupying beds in the hallway. What a great system we have (remember this story once the opposition starts rolling out the rhetoric against universal coverage- we are already there people). We got the call that Kate�s CD34 (number of stem cells circulating) was at a 2 (needs to be 15 to harvest). We drive to the hotel tired and frustrated that night. We switched hotels that day and checked our bags at the previous hotel. I retrieve our bags and begin the unpacking. A sick feeling sets in as I realize I forgot the �G� in the refrigerator at the previous hotel. I call and tell them that I am on my way back and desperately need that medication. I waited 30 minutes for housekeeping and loss prevention to come to the reality that the �G� had been thrown away. I can only imagine how pathetic I looked like when it set just how bad yet unfortunately predictable this situation had become. Without the shots, Kate would be set back on her stem cell harvest, our insurance company would not be taking pity on me and replacing this expensive medication because of my stupidity, the only reason we were here in the first place was slipping away in front of my eyes. I asked them to take me to the dumpster. They laughed, I did not. Thank God for clear garbage bags. After going through about a dozen bags with the security guard (who was thoroughly hating me at this point) we found it. The roller coaster of emotion left me shaking. I pulled the guard out of the massive dumpster and gave him all of the money I had on me for service above and beyond the call of duty.
Day 7: CD34 at 7- no harvest
Day 8: CD34 at 7- no harvest � increase �G� by 50--PET scan that day
Day 9: CD34 at 4- very disappointing- no harvest- one more shot tomorrow�we were scheduled to fly home today, flights cancelled
Day10: CD34 at 6- harvest attempt cancelled, met with Dr. to review PET scan, worried about something large in lung, met with pulmonologist who wants to do bronchoscopy on Monday. Realize on way back to hotel that I was supposed to return our rental car yesterday. Whoops.
Day 11: Spirits low due to failure to harvest, PET results, and worries over lung lesions, Kate wants Disneyland for Grant again so we drive to boardwalk area near Galveston, Disneyland routine again, Kate very tired but holding up. Send off dinner for Donna that night at favorite Tex-Mex joint. I do not have time hear to express our gratitude towards Donna; she keeps us in one piece routinely. We love you dearly.
Day 12 Grant and dad go ice skating for the first time- we go to Houston for this experience- in a mall no less.
Day 13 Meet with Dr. again. He feels he rushed PET description on Friday and wants to go over details more �slooowwwwllly�. Slower is better for Kate�s spirits. PET not as horrible as originally feared. Definite disease progression but whereas it previously looked like every bone in her body was riddled with disease, it turns out that the �G� was causing most of that appearance. Kate has bronchoscopy under general anesthesia.
When the nurse calls me in to see her after the procedure, I am told that she wasn�t being very cooperative as she came to and they thought she might be more cooperative with me. She thought it was strange that I laughed so hard when she said that. They obviously do not know Kate. We wheel her out into the car, drive Donna to airport, arrive back at hotel where Maria is waiting for us.
Day 14: Kate miserable, Grant and dad skate again, he quickly bypasses his old man�s competence level on skates. Grand and I go see Monsters vs. Aliens and we feast on popcorn and Nerd candies. We dine in for our last meal in Houston and are beyond ready to get home.
Day 15: Departure day. I pack while Kate and Maria go to retrieve some food. Grant is playing on the floor when I hear him start to cry. I find him holding his throat and saying �it tastes ishy�. I ask him to tell dad me exactly what tastes �ishy�. He tells me he found an orange Nerd on the floor and put it into his mouth. This child has never been one to pop anything unknown into his mouth. I frantically go through Kate�s pill bag to see what might look like an orange Nerd.
Our son had just eaten a laxative 4 hours before we were to board a plane for the long trip home.
Brett

Wednesday, April 8, 2009 4:08 PM CDT

So much to say...

Drama was once again the theme in TX. I will have Brett write about it being that most of the humorous drama involved Brett & Grant. We saved the 'tragedy" for my part of the play.

We met with Dr. S today. He & Becky are great at keeping me calm and putting things into perspective. It was a difficult visit anyway. We will up the pain meds, which I despise as it interferes with my playtime w/Grant. It is either this, or end up in the hospital to manage it so of course we will up the meds. We will begin a drug called "Sutent" today. It is an antiangiogenesis drug (this it the only program in the world that doesn't have spell check!). It will essentially choke to supply of blood that feeds the tumors. I am anxious to see begin and see some results. There are tumors in my bones, lungs, jaw, pelvis etc... As odd as this may sound, it isn't as bad as we initially thought. It isn't good, but it is not as bad as the PET in TX initially suggested. I asked 'how bad is this?' to which Dr. S. replied, I think you already know that. We need to treat you and we need to see some results.' So, this is the task - focus on the Sutent cutting off the blood supply to all tumors in my body. Brett & I have no doubt that it will work. Please hold our little guy in your heart and prayers as it is difficult for a five year old to understand why we can't play frisbee after dinner anymore. Thank you.

I am exhausted so we will write more in the next day or so. For now, I do ask for your prayers and well wishes to a friend who is serving in Iraq. His name is Chad S. and he is a wonderful person. He and his wife have been serving our Country for a very long time. Thanks for your prayers and positive thoughts that he and his troops have a safe tour. Thanks also to the friend who told us about him - if you are checking in, we will write you soon as well.

Blessings to you,
Kate

Tuesday, April 7, 2009 7:08 AM CDT

We got the lung biopsy reports last night and the good news is that we can begin Sutent next week. (which means that the crap in my lungs is cancer)
Our insurance company just informed us that we will have a co-pay of $2,200 per month with no maximum. Lovely. Thankfully, the TX doctor is looking into a program that will reduce the cost significantly and we should hear by midweek.

I wanted to tell the TX doctors, "I told you so", but restrained myself. We spent over an hour on the phone with him Fri. night and he is really thrown by how aggressive this disease became despite my warning him of that fact during our first meeting. It's over and we are moving on. The good thing is that he is now very vested in our case and has really spent a great amount of time researching for us. He feels Sutent should crush the "c" in my lungs and is very optimistic that a new, even better drug should be available for us within the next couple of months.

We will meet w/ Dr. Schwerkoske on Wed. We will let you know how it goes. I began Zometa treatments yesterday which should help w/the mets in my bones.

Kate

Monday, March 30, 2009 9:20 PM CDT

UPDATE: Everyone is home as of Wednesday night! Back to the regular routine, which will feel great.

Monday:
Kate had the scope today. At first blush, the doctor did not feel it is pneumonia in her lungs. That means, it is most likely metastis, and it also means she could still end up getting the Sutent. If it is pneumonia, she will not be able to start on the Sutent until it is cleared up. She doesn't have any other symptoms, however, is it is unlikely.

She's doing ok tonight. Her lungs are "sore", so her breathing is a little wierd and she feels like something is in there. She has improved in just the last few hours, though, and we have all day tomorrow for R&R. No medical appointments until they get home. We expect to come home on Wednesday.

Kate and Brett spent 2 hours with the doctor this morning, going through the PET scan results. He apologized about the Friday results meeting, stating that he didn't take enough time to review them and maybe panicked them. Apparently, some of the "glowing" on the scan was due to the drug they have been giving her for the bone marrow harvest. There is metastisis, but it is not as bad as they originally thought. Some of her pain could also be from the drug. She hasn't had any since Friday, so our hope is that the pain will be down before the Wednesday flight.

We're excited to get Kate home. Keep the prayers and thoughts coming!

Love,
Maria

Friday, March 27, 2009 6:17 PM CDT

More news from Houston...

Things have not improved much (or any). The counts dropped back to 4 on Thursday and I don't know what they were today but the stem cell harvest was called off. Unfortunately, that was the best news of the day.

The PET scan results show some significant metastisis to the bones and lungs. They aren't actually sure what the lung stuff showing is so on Monday they are going to do an outpatient surgey to determine it. Kate and Brett decided to do it while they were down there instead of coming home for it so that they didn't run into any insurance or scheduling delays. Once they know what it is, they will determine if she can still try the Sutent drug for treatment.

I happen to be in Houston on business on Monday, so I will stay until Wednesday, when, hopefully, we will all return home to some normalcy (and all of you!)

Keep the positive thoughts coming!

We are thinking of all of you Moorhead and Fargo friends and family and also sending positive thoughts your way.

Maria

Wednesday, March 25, 2009 6:48 PM CDT

Kate, Brett and Grant are still in Houston. It has been a rough trip. The day they arrived, Kate started feeling quite a bit of pain in her back. Travel days are always rough on her, so at first it just seemed like a temporary issue. She has continued to be in fairly significant pain, however. They ended up spending Monday in ER for 7 hours but no improvements. I guess the ER had good folks working there but were insanely busy and she was only seen for a very brief time in the entire 7 hours.

She is doing daily shots to get her stem cells to increase production so they can harvest. They need to get the number (don't ask me what number) to 14 to do the harvest. On Monday, it was 2; Tuesday it was 7 and was 7 again today. They'll give her some more time, but it is possible the harvest could be cancelled if she can't get the number up there. It isn't a sign of anything..it just happens this way sometimes.

Today they did a PET scan to see if they could figure out what is going on that is causing so much pain.

In between all of that, they are trying to do some fun things as a family. My aunt Donna is down there with them and entertaining Grant during the day. Kate's energy level is not high so the "fun" has been limited.

Not sure when they are coming home. It's a day by day thing right now. Hopefully soon!

All energies you have to offer can go toward getting the pain level back down.

I'll update again when I learn anything new.

Maria

Saturday, March 21, 2009 1:10 PM CDT

The weather is here, wish our results were beautiful...

Not so good news in TX. Our latest scan explains why I have been having such intense pain again. We will have another PET on Wed. and we humbly request all,any positive thoughts and prayers. We are moving forward with the stem cell harvest and I had the neck biopsy yes terday - which is very good. We are doing our best to remain positive but the news thus far is not good - yet.

We have many wondeful and funny stories about Grant but Andy is leaving for the airport and taking her laptop with her.

Love to all,
K

Tuesday, March 17, 2009 10:07 AM CDT

Can you tell I was a bit overwhelmed yesterday? Frustration and pain are never a good mix!

Good news all the way around!
*MD Anderson cleared us for the harvest
*Our insurance has agreed to pay the $5900 fee (at least for this year)
*We leave for Houston tomorrow!
*Donna & Andrea will join us to help w/Grant (split time)
*My chest CT yesterday came back w/no changes

Our laptop is on the fritz still so we will update as we can. Thank you so much for the well wishes, prayers and all the help!

Love to each of you! Be your own best advocate!
K

Friday, March 13, 2009 8:29 PM CDT

MONDAY March 16, 2009
Hi all,
We finally got approval to head to TX. They want us there this Wed.! We are happy to finally go but seriously, this is ridiculous! They are willing to schedule me because they came up with a $$ figure for storing my cells - I don't even know where to begin with this issue. They are charging us far more than we could have imagined! The UofM and U of Michigan don't charge a fee for storage yet TX is charging a ridiculous amount of money! We are going and that is all that matters at this point.

I guess we are going back to the Lone Star State tomorrow! My aunt Donna (she is amazing!) is coming to help w/Grant but we would like another person to help for part of next week.

*****************************************

It has been a frustrating week regarding our medical situation. We thought that we would have been to TX and back by now. Instead, we are here basking in this below zero temp. due to an insurance issue. MD Anderson simply will not schedule the biopsy and stem cell harvest until we know what and how to bill for the storage of my stem cells. My insurance company is telling us that if MD Anderson bundles the fee together, we have no problem. MD Anderson tells us that they have no idea how they bill this and for all our MD Anderson contact knows, "storage may even be free." I offered our credit card number so that we can get moving but she told us that she doesn't know what to charge us therefore, we cannot schedule. REMINDER - I can NOT start the new treatment drug until we have these procedures done! I cannot believe how long this is taking and that MD Anders! Seriously -I am blown doesn't even know what they charge for their own services away by the red tape and incompetence. Fortunately, our insurance contact is fantastic and is doing all she is able to do but MD Anderson is a mess.
Adding to my tears of frustration, I spent a couple of hours on the phone regarding insurance options. Our Cobra is soon to run out and we thought we had everything in place for our new provider (an enormous amount of time went into finding me insurance). Today, we found out that because I am eligible for Medicare, I MUST take it. This is ridiculous because we called Medicare a year or so ago and after hearing what types of treatments I need etc... the contact at Medicare advised against signing up for Medicare because they would not cover the majority of what I am needing. Case in point, I was told today that if I am on Medicare and need that stem cell TRANSPLANT, they will not pay for it. Lovely. Despite not having a lapse of insurance coverage, no insurance company is willing to cover me. Apparently, if I was still on insurance through work, they would have to under "group" but no one has to cover me as an individual. Also, if I was not "eligible" for medicare, I could be a part of this MN group plan for people who have pre-existing illness. We are screwed. If you don't like the idea of Universal Health Care, try getting a rare and serious illness.

Outside of all things medical, we had a nice week. Grant fought back his first cold of the year - we are thankful he only had the sniffles for a day and all is well again. I got to spend some great quality time with Karin as well as Mindy & Jen. We had a fantastic weekend at my Mom's and spent the sunny Sunday sledding and walking around the lake. Brett's Mom should be arriving any minute to celebrate Brett's BDay with his family.

I wish you all great health and joy. Take good care of your health - protect it, fight for it. Thanks for the incredible energy and prayers - despite the red tape issues, I am feeling better and have litlle doubt that it is due to the tremendous support we receive. Love to all of you,
K.

Saturday, March 7, 2009 11:23 AM CST

I lost my original post so here are the highlights:

* Today is Brett's 38th BDay! Feel free to fill his email with BDay wishes if you so desire! We are in Nisswa to celebrate.

* My brain MRI scan came back "unremarkable" which included the obvious jokes.

* We received approval for the stem cell harvest and transplant but were denied the cost of storage which included the obvious ?@#!@$@?

* We hope to be in Houston by the end of the week and are grateful to all who offered miles for the flights.

* We have no idea how we will work out the details of bringing Grant but I am not leaving him in MN for the week.

* Thanks for all the great BDay wishes - I received four magazines, from three seperate people, that had Michelle Obama on the cover!

* Happy 21st BDay TImmer! You are probably at the bar already but if not, have a wonderful time, be safe & smart!!

** I have to add one more thing - Why is it that when someone shares that they have cancer, a typical response is to tell the most horrific story as a way to relate? It doesn't usually bother me but I can hear the TV repair man telling my Mom about his uncles' poor outcome from cancer after she told him why we are here. The same thing happens with pregnancy. I was struck by the number of people that felt compelled to share their worst and most horrific birth stories just as I approached Grant's due date. I was equally struck by the fact that I did the very same thing to a pregnant friend shortly after I had Grant! I believe it took me an hour to get the taste of my foot out of my mouth. If someone tells you that they have cancer, please resist the temptation to relate by sharing a story with a poor outcome (if it is your own story, it is ok - if it is a friend of a friends' neighbor, that is different). If it can help the person in some way, by all means, share but if it is simply an attempt to relate, please keep it to yourself. If you do find your foot in your mouth, don't fret. For most, it is the intent that matters and the story itself forgotten.

Have a wonderful weekend! Wishing you love,
K

Saturday, February 28, 2009 11:44 AM CST

*** An updated message from Kate is below. She is in need of airline miles, so if anyone has excess miles that they are willing to donate, we'd be happy to accept! NWA charges for transferring miles, so it is best if you have enough for an entire ticket (25,000 miles). Email if you are able... Thanks. ***

The following is an email she sent to the family:

Hi all -

All in all, our trip to TX was a success. As usual, there were many hiccups but we made it through! I will bullet point the updates as it may be easier to read.

* We will start a new drug called Sutent. I will take one pill daily for four weeks, take a two week break and begin the four weeks on, two weeks off cycle for 6 cycles. Most common side effects are: exhaustion, nausea, thinning hair and loss of skin on hands and feet. The hands and feet issue tends to be the biggest problem w/this drug. It may have a minor effect on my blood counts so we will monitor weekly.

*Before we can begin Sutent, we must first obtain a large "chunk" of tumor from my neck. They will use this to study the effects of Sutent and other drugs to help determine what might work best against my specific tumors.

*Before beginning Sutent, we will also do another stem cell harvest - just like the one we did in July, '05. The doctors are amazed by the results of my stem cell transplant. Although they have little reason to believe my own stem cells can "rescue" my marrow again, they feel we should try to harvest it just in case. The MDS specialist told us that if I were his wife, I would get the stem cell harvest done asap. Note, it is THEY who have little reason to believe. I, on the other hand, have every reason to believe.

*Because the U of M won't harvest my cells, I must have this done at MD Anderson. Thus, we need to return to TX within the week or so to harvest my own cells AND to do the biopsy. They would like me to start the Sutent within the next two weeks.

*The admin woman told us that my siblings HAVE been APPROVED for the stem cell screening. Each sibling will receive a packet in the mail. I believe it is only a swab of the lining of your mouth. It is our hope that I won't need any type of transplant but if I do, I will first try my own cells again and then move to the best match from one of you.

*In my opinion, this is the best news of the trip.... As you know, Paraganglioma is considered an orphan cancer due to the fact that it is so uncommon which in turn, no pharma companies are interested in studying the disease. That has now changed and for the first time ever, there will be an abundance of money, interest and political push to discover the cure! A major Pharma company is now interested in studying the disease and developing a cure.

We ended the trip with drama that you only see in the movies. Just as we were about to drop off our rental car, we received a call telling us to return to the hospital immediately - something was wrong with the echo cardiogram done early that morning. After my heart seemingly stopped, she eventually shared that it was not my heart that was the problem, rather, they had done the wrong type of test. With just under two hours to take off, we raced back to the hospital for my second echo cardiogram that day. Finally, we arrived at the airport in time to hear them announce our names over the loud-speaker. Crisis nearly adverted. As we cruised through the hallway, I realized I was losing my peripheral vision. I couldn't see all of Brett's face despite the fact I was looking right at him. The flight attendant told us that we had to get on the plane, "NOW!" I asked for a medic or EMT as the last time this happened to me, I was in the middle of a hypertensive crisis and my blood pressure was at 230 over 140 (I developed Eclampsia while pregnant w/Grant). The attendant wanted us to tell her if we were going on the plane or not. After no reply from me, she slammed the door and went on her way. The other attendant told Brett that they do not have EMT's or the like at their airport but that HE could call 911. Lovely.
Thankfully, the snowy weather in MPLS grounded our plane and they all sat on the tarmac for an hour before de-planing. 30 mins later, my vision returned and a raging headache ensued. We were still able to board that flight and actually made it home that same night! A HUGE thank you to Mindy and Karin for having the foresight to bring Grant from Andover to MPLS before the storm hit! Driving to Andover would have been a horrible way to end a very long day! A huge thanks to Nate for picking us up in the storm! We got stuck in the snow three times but we finally made it home! Ahhhh.... We love our bed and our new sheets!!!!!!

Thanks to Mindy and family for taking care of Grant - Jen helped too! Thanks to Karin for meeting Mindy and having Grant for the day so we didn't have to make the long trek in the snow! Thanks to Mom for donating the miles so that Brett could go to TX! Thanks to Nate for picking us up and for wearing snow boots so that he could push the car through the snow banks! Thanks to Paul & Lynn for the financial help to make the trips possible! Thanks to Donna, Stacy, Jerene & Barb for painting our kitchen & stairwell while we were gone!!! Thanks to my siblings for their willingness to be tested for the transplant! Thanks to GRANT for being such a brave little trouper and for being the light that gets Brett & I through!

Oh yeah - Thanks to all of you who are helping to make this possible when we must return to TX next week (none of you know this yet but...Here we go again!!!!!!!!!)!

I am not proofing this so good luck making sense of it all! We love all of you!
K.

Friday, February 13, 2009 0:05 AM CST

**Brett's writing is a tough act to follow - As you can see, despite the illness, I live a blessed life.

We leave for Houston on Tuesday. The doctors in TX decided to cancel all scans and tests for reasons they are not willing or able to share with us. I feel like we are part of a mystery tour and the trip will lead us to our next clue. We will see the doctors Wednesday and fly home on Thursday. We have not yet heard from their business office so as of today, none of my siblings have been able to get tested for the stem cell transplant. Another incident of hurry up and wait. We thank you for all of your warm words, prayers and acts of kindness.

Grant is here and would like to say something: "If you are friends with me, Grant, then I will be prouddd! Thank you for sending prayers for me and super thank you for prayers for Mom getting cancer because I don't want her to have cancer. Goodbye from Grant."
I couldn't tpye fast enought to keep up with his Webkinz rant but other than that, it was verbatim.
We hope to have answers about the clinical trial after this trip. Keep your fingers crossed.

With tremendous humility, gratitude and love,
K.

One last thing...Brett's Mom is trying to sell her timeshare in St.John's Island. It is a beautiful location and villa if anyone is interested. She needs to sell so she has listed it for a third of what she paid - and she will consider a "best offer" price. If interested, here is the link:
http://minneapolis.craigslist.org/for/1043589219.html

Good Evening/Morning,
Just a few ramblings from the husband.
I was doing some light cleaning (apparently there is another kind) of the kitchen tonight and was looking at the Birthday decorations still hanging in the kitchen nook. It reminded me of one aspect of this journey that is even less glamorous than all of the other indecencies that have become a part of our lives. Tangent #1
Kate's mother did an amazing job of making her 8 kids feel extra special on their birthday. She went all out to make them feel that their day was all about them- which probably was a difficult task with such a large family. I have come to appreciate what a wonderful gift that was for her children. However, in our world, the ongoing battle pits my annoying obsession with attempting to protect Kate from herself (how I rationalize plenty of irritating behavior) with Kate's desire to life as normal an existence as she can. I have to believe this stems from seeing her suffer so incredibly in the hospital and being powerless to help in any way. A brutal aspect of life that we wish on no one and feel for all that have experienced it. So getting back on track........I stand staring at what Kate has created of our kitchen to honor her mother's tradition and to make the most of such precious moments and feel ashamed. Ashamed that in my haste to "protect" I miss the true picture. In my nagging her to just rest and not take so much on I don't respect the fact that, given limited strength, this is exactly how she would choose to spend it -consequences be damned.
I knew of and was drawn intensely to this aspect of Kate. I have repeatedly, and lovingly by the way, referred to her as the wild horse I have no hope or desire of ever taming. So one can imagine how this makes for some interesting times at our house during this journey.
It seems my time for this session is up. What the heck my point was, I am not sure and why I chose this venue is interesting. In conclusion.....Kate, once again, created a magical birthday experience for the not-so-young-anymore miracle of our life......She continues to amaze me how she keeps so many aspects of our world on track in spite of plenty of excuses to do less instead of more......
Happy Valentines day Kate, you are the absolute miracle of my life and I love you ferociously.
B

Saturday, January 31, 2009 8:46 PM CST

Friday, Feb. 6th
I went to make travel arrangements for our upcoming appt. at MD Anderson. Thankfully, I checked my MD Anderson account for some times and saw that someone canceled our appt. for the end of the month! I emailed the Doctor, he told me I would hear from someone today to reschedule and he didn't know why the appt. was canceled. Our administrative nightmare continues....
***
***Tues, Feb. 3
After many email exchanges, we will wait until late Feb. to return to MD Anderson. I feel better knowing that there is a new clinical trial rolling out in three weeks. We were originally told 3 to 4 months which, our experience has shown, often means a year or two years. Weeks we can wait - months we cannot. We are trying to get my siblings screened for a potential stem cell donation. I may need this if the next treatment causes me to lose my stem cell graft. As of today, our insurance is denying coverage - each screening costs a little over $500 and the actual stem cell transplant costs over $250k. Thus far, our insurance has been good to us. We are appealing the decision and are optimistic. I am hoping we won't meed the donor transplant to begin with!

I think I am more excited for Grant's BDay than Grant! My Aunt Donna has been helping me make Super Hero capes for Grant's friends - I should be making one for her! She has been coming over to help us for the last 3 1/2 years and for the past few months, she has been coming twice a week. She is such an intelligent, interesting and generous person - I am grateful to be a part of her family.

Brett still promised to write -- Have a great week and Happy Valentine's Day to all! ***
We are still in limbo. Yesterday we received an email from the doctor at MD Anderson and he said that he had finally connected with Dr. S. Unfortunately, I don't think any decisions were made and despite the progression, they did not think it necessary to move our appt. from late Feb. I believe that the reason they are dragging their feet is because there are no great treatment options. After the massive mistake the Radiologist made, our hands are tied.

On to the brighter side of life - Grant turns five on Feb 9th! When I was pregnant, every parent I knew warned me to cherish each day because the time would pass so quickly. Even with the clarity 'c' brings and the gratitude I have for each day, somehow the last five years whipped by me and I can't believe that my baby is now all boy. Kindergarten seemed to be a lifetime away and I am so grateful to know that I will be here to hold Grant's hand as he walks into this new phase of life. (Obviously not until September but I am sure the next few months will fly by just as the past few years have.)

We will write more tomorrow - Brett has committed to writing more often!

I hope you all were able to enjoy this WARM and sunny afternoon! Great love to all of you!
Kate

Monday, January 26, 2009 10:37 PM CST

We are still waiting... MD Anderson has not yet returned my Oncologists calls. It didn't help that my Oncologist had jury duty last week!

We will write more tomorrow as we truly believe we will hear from someone, anyone. We are happy - Grant is joyful, silly & happy, Brett is watching Charlie Rose and I am reading about President Obama in my Time magazine. Life is good.

Thank you all for the incredible support. We are forever indebted.

Kate

**The following is from Jen Nord, CSB 1994:
Since there are several Bennies and Johnnies who check this site, I wanted folks to pray for the family of Anne Lewandowski Notch, who lost her battle with colon cancer this past Wednesday. She was CSB '97 and was on the swimming team with me. It was discovered in October '07 when she was 7 months pregnant with her third child. It was stage 4. Her story is at http://www.caringbridge.org/visit/annenotch

Wednesday, January 21, 2009 1:31 PM CST

Wasn't very nice of us to put a posting like the last one out and then wait a week to update, was it?

Kate's computer died, so that explains the lack of updates. She also asked me to tell you that so you call her instead of emailing her if you need something. You can email me at ophelan@comcast.net if you want me to get something to her.

I don't have a lot of details about the scan. I do know that it shows activity again in many of the same areas that were showing last fall. In other words, the work the chemo did at knocking the cancer back is starting to be eroded. It explains why she has been having more pain again.

The St. Paul docs and Texas docs are going to put their heads together to determine the next steps. Everything seems to take way too long to decide when you are in the wait mode.

In the meantime, Kate is throwing her focus at the really big event...planning for Grant's 5th birthday (Feb. 9th).
Expect another 100 photos after that bash.

Hope everyone is keeping warm and keeping inspired by the spirit of hope that is kindling in the nation.

More updates to come...

Maria

Thursday, January 8, 2009 9:19 PM CST

Wed. Jan. 14th
**Apparently, my latest scans suck. We started to get the preliminary results today but after hearing a bit about it we decided to wait for the entire report. We thought we will take another day of normal life before we have to deal w/the twists and turns "c" brings. ***
Happy New Year everyone! Many people have been on us about creating a Facebook page but as you well know, we can't even keep our Caringbridge site up! I should have probably added "keep up our site" on my New Year's resolution list.

Grant had a wonderful Christmas (we all did). We spent the Holiday at Maria's and topped it off with a Mortenson celebration in St. Cloud and then at our house. Santa showed up to check out the dilapitated chimney and brought Grant a bell from his sleigh as the first gift of Christmas. Grant was more interested in handing out the gifts to family members than he was opening his own! It was a joy to watch him hand out his gifts and act excited for everyone. I need to get better about writing things down as my memory is terrible and he does and says so many funny things! He is a precocious little man. Grant seems happy to be back at school and daycare after a nearly three week break. We really love the preschool at Mt. Olivet. They do an incredible job!

Grant continues to melt my heart with his thoughtfulness. I was putting him to bed tonite and telling him about my Dad, his Grandpa Norm (he passed away in '99). Grant said, "Mom, I am going to look for a new Dad for you."
"What?" I said.
"I am going to ask to someone to be your Dad for you because you miss him so much."
"That's ok Grant. I don't need a new Dad because Grandpa still is with me in my heart. If I were a kid I may want another Dad in my life but since I am an adult, I am ok." I said.
"Ok Mom. But if you change your mind and want me to ask someone for you, just tell me on a different day."
He is so darling!

Sadly, another friend passed away from the horrible "c". Jim Owens died of a brain tumor at the young age of 46. He has been an amazing advocate for all of us with cancer. It was Jim and his brother John who got MOHPA to take us (with the help of the Bulldog)way back in the beginning of this journey when there was no other group who would work with us. He was a true inspiration to us as he never took no as an answer - not from insurance company's, not from clinical trials. We witnessed at his service tonight just how well he lived life to the fullest while battling cancer. Amazing.

I have had a case of the 'envy's' lately. Brett has been going to a boot camp class called "smash class" and I am jealous that I am not able to work out w/him (I used to love kick boxing). We have friends who have fantastic jobs and making a difference in other's lives, training for marathons, traveling, taking the kids sledding and throwing a New Year's parties for the neighbors... I have a wonderful life! I genuinely love my life and would only change one thing if I was able but occasionally little green goblin sneaks into my life and surprises me!

We are still waiting for my PET and CT scans from MD Anderson to be read by our local Radiologist. We are far from impressed w/MD A. administration. They told us that we should hear by tomorrow. I have been more symptomatic which is concerning. We are hoping that the business of the Holidays is the reason behind my exhaustion and pain issues. Keep your fingers crossed. With Kindergarten just around the corner, I re-negotiated with God that I must now be here to see Grant graduate from high school - happy and w/honors of course :)

My brother Joe wrote an amazing song for me. If I get his permission, I will post if for you. I tried to call him to thank him but choked up each time. I finally was able to leave a message on his cell. Just barely.

I would like to apologize to all who have been so supportive and giving as of late. I try to keep up and write notes to all who have touched our lives but depending on how I am feeling or how chaotic our lives are, my best intentions are just that. Please know how very appreciative Brett, Grant and I are for the fantastic meals, generous gifts and treats, snow shoveling etc... I have no doubt that it is the support and generousity of all of you that we are able to keep our heads and attitudes held high.

Love to you.
Kate

Sunday, December 21, 2008 10:28 AM CST

**Another quick story about Grant: Grant was resting quietly during our long drive to the Johnson Space Center. All of a sudden, he opened his eyes, smiling the cutest little smile he said, "Mom, when I think of you I smile." "Do you know why I like you so much Mom? Because you're funny, you're sweet, you're smart, you're nice and you are a good Mom." He had his shoulders raised up and his head tilted w/the sweetest smile. I am putty in his hands!
We wish all of you a wonderful, joy-filled Holiday season!
Kate **
NEW POST FROM BRETT:
Happy Holidays,
Yet again, it has been a long time between updates. The good news is we have been quite busy lately. With Kate's improving blood profile her energy is on the rise as well. She loves this time of year and feels like she needs to make up for getting a late start with all of our recent travels. Soooo.... lots of shopping, and lists, and Christmas cards, more lists, decorating, some more shopping and a Santa visit. I am the one needing naps lately. It is a precious time as well. There were many smart people out there that believed we would not see another holiday together.
Texas was nice. We brought the snow to them this year- literally the day we arrived (4 years without any snow prior to our visit and 10 years without the 2 inches we brought). Classic Hunt Mortenson travel weather. We brought our little man with us and he was a trooper. The first clinical day brought the usual hiccups. Kate usually has blood drawn from her the port in her chest. Her poor arm veins have been poked too much and are not willing to give it up anymore. But yet again, even with a Dr.'s order in hand to draw from her port, they came up with another reason they could not (this is the only time we see a hint of tears in Kate's eyes on the whole trip- MD Anderson is an amazing institution with wonderful and brilliant Dr.s and nurses...but like any large facility, the coordination and unfortunately the compassion that these cancer patients truly deserve/require gets lost sometimes in the busy-ness of it's scale). She crawls out of the clinic 13 HOURS later, again delays brought on by lack of coordination and just too many people wanting to get in before the holiday season. News on the medical front ranged from miraculous -as Maria updated previously- to good for the most part. We now are back (fingers crossed) to just one issue at the moment and hopefully are in a good place moving forward with the next cancer treatment. We will go back in February for round two of scans and potential treatment at that time.
We had a fun family trip on the weekend. Forgive the multiple tangents involved in my writing style because we are going on another one.....Houston could just as well be Mpls./St. Paul (or any other larger metropolis for that matter) with poor city planning and worse roads. By that I mean because of it's size (5th largest city) and urban center, you just don't feel like you are in Texas. You really don't even hear much an accent from the people you encounter as part of your stay. So in our attempt to give Grant a taste of what two parents who grew up in a town made famous by a Coen brother's parody of scandanavian sensibilities believe a "true Texas" experience should be.......We took him to a "cowboy" ranch for Campfire Christmas. It was really quite fun and educational as they take their guests to different periods in Texas history and demonstrate how Christmas was celebrated at the time. It ended with us sitting around the campfire and singing Christmas songs with our cowboy lead on the guitar. It was wonderful and when our never shy son declared to everybody on the mule drawn hay ride that his mom has cancer, we met some extremely warm and giving people. True Texas hospitality.
May your days be Merry and Bright,
and
Merry Christmas Ya'll
Brett
--Almost forgot a great Grant story from the trip. Grant and I were walking through the lobby at MD Anderson when we came upon two young women in traditional full lenght black burkas. Grant walked up to them, pointed, and excitedly called back to me "Dad, look,.... Ninjas!!!" After looking for a rock to crawl under and stifle a full out laugh, I apologized. Thankfully they were laughing as hard as I was and happily stated there was no need.

Sunday, November 30, 2008 11:14 PM CST

***Friday, Dec. 12
Just a quick update from Houston. Brett called and said the bone marrow doc says no signs of MDS (blood cancer) anymore!! He said he would never have recommended the stem cells be put back in based on her history but her bone marrow is producing platelets on its own again. The girl continues to pull off miracles. You guys, with all your prayers and postive thoughts, are doing an awfully good job!
Maria

***Wednesday, Dec. 3rd
As we have noted often, we are living life in the margins. Despite all of the experts telling me that the stem cell transfusion would be of little if any help, my white cells and platelets are IN NORMAL RANGE!!!! My red cells are still lagging but that is of little concern. We plan to send our next lab report to the doc at the U so that he can see how well the transfusion worked! I am happy to send this "I told you so" to show him that life is always worth the effort. I know he was going by the statistics but had we listened to him, I may not be here today. I recognize that this did not cure the MDS (leukemia) but I am a long way away from worrying about whether I would live long enough to see who would lead our Country.

We are having a few issues w/MD Anderson. When we first arrived a couple of weeks ago, they told us that we were a day late (we weren't). They were great about making things work but ever since, our case has been 'jinxed'. A very long story short, we finally got our new appt. issues worked out but once again we are leaving on very short notice. We need to be there by next Wed. and our last appt is the Mon. following (the doctor we are seeing only sees patients on Mondays and I need to have several tests prior to meeting w/him - not the most out of town friendly). Grant will be joining us so all of you who know Houston, we'd love some ideas of how to entertain the young man!

I received my bone marrow biopsy report yesterday (no, they did not put me under). Unfortunately, the report said that the "smear was not adequate" and no one called to tell us what this means. What the heck! Isn't the reason they made me have another one a few measly weeks after my last biopsy because they are the best in the Country?? Thankfully, w/my blood counts, we are not worried about anything imminent. Despite the issues, we still feel that MD ANderson is the place for us. We'll happily deal w/them as long as they continue to give us hope!

Brett & I are convinced that I am alive at this moment due to the wonderful love and support we receive from our incredible, tireless family and friends. Along with that, your well wishes and prayers are doing their part and we are forever grateful. Many blessings to all of you! We will write again as soon as we find out what the bone marrow biopsy means.

Great love to you,
Kate
It has been a long time again between updates. We have been to Texas and back. We have also been taking a crisis break for a few weeks, which has been very nice. Kate's stem cells seem to have found a home and continue to crank out new platelets and, just recently, white cells. This development has afforded us the rare luxury of not having daily medical appointments. We pray that this holds and continues to improve. That would open up some potential treatment options in addition to prolonging this crisis holiday.
Speaking of holidays, we have truly have so much to be thankful for- a short list........
Hope anew for potential new treatment options from MD Anderson
Supportive family and friends that take a little of the crazy out of our lives
Our son, who is our greatest blessing, and is in that phase where- on command- he has no fear of singing his new thanksgiving turkey song at the top of his lungs to complete strangers without any hesitation- easily the sweetest thing I have ever witnessed
A home in troubled times
A wife who once again rises up to overcome new challenges, leaves her boy for a few days, flies across the country, subjects herself to more rounds of brutally painful and humiliating tests, rises above the expected and unexpected frustrations and hurdles, makes these doctors see her for the person/fighter/mother she is before they write her off by just looking at her file, and most of all, allows herself to once again feel hope
Having known my uncle Don who passed away yesterday

More to come soon,
Brett

Friday, November 14, 2008 11:31 AM CST

**The Gala was so much fun! We raised almost $50,000 for the Pediatric Oncology Social Worker / Psychology Grant!!! We will write more about it soon.
We put more of the professional photographs up - under view photos. Margo did an great job.

Quick update:

PLatelets are at 89,000!!! (89)
WBC: 1.6
Neuts: 0.6
RBC: 12 (I had a transfusion on Wed)

Yeah! If my platelets go over 100 and my neutraphil's go to 1.5, I will be eligible for a study out of MD Anderson and/or AZ. My counts have not been this high in over a year! Reminder, the chief doc. at the U. called me to "save me a trip" because he didn't think the stem cell transplant would help and he didn't feel it necessary to meet. As I told him, I live my life in the margins and when the percentages of success are low, I succeed! I ultimately insisted on the transplant and we never even met w/the doc. until the transplant was on it's way!

We received a call from MD Anderson yesterday and are set to see them this upcoming Thurs. & Friday. We are working on arrangements now.

The American Cancer Society Gala is this Sat. With the help of my nephew Timmer, we are frantically pulling together a video/speech about our journey parenting through cancer. I was able to choose where the donations will go. Brett & I are starting a scholarship program / grant for social work or psych. students to pursue their Doctorate as a Child Life Specialist. They must specialize in working with children who have a parent w/a terminal illness and/or cancer. We found that 25f all new cancer diagnoses are parents w/children under the age of 18. There are few to no specialists who work w/young children in MN and for that matter, there are few in the entire US. It is a grossly underserved population. We are very excited about the possibilities!

Blessings and gratitude to all of our Veterans...

More to come....
K

Friday,November 7, 2008 10:27 PM CST

*** Opps. This is the video from Oprah's show. Wrong song! This one is "It's A New Day" I like it...
http://www.youtube.com/watch?v=RHWByjoQrR8
***

We hit over 400,000 hits to the website this week. Crazy!

UPDATE: Platelets up to 50! Stay tuned....

As you can imagine, the Hunt Mortenson household is ecstatic about our new President-elect, Barak Obama! I strongly believe that if anyone can help heal our country, the Obama's can. Watching, listening to both makes me want to be a better person. I have been following Michelle Obama closely and have a major girl crush on her! She is amazing!! This is such an important, wonderful thing - I am moved to tears. My friends have been calling to express their happiness to know that I won't be pulling out my anti-Palin file and talk their ears off when they come to visit!

I hope you will click on this link, my last one, which is from today's Oprah show. I caught the last 5 mins. of it and this is a beautiful song about needing each other in the days to come. I thought it was moving but I admit I am an easy mark these days. (you may need to copy to your browser)

http://www.oprah.com/media/20081105_tows_electionsong

We had a good appt. w/the doc today. My platelets are rising and are at 39 It has been 9 days since I last needed a transfusion so we are hopeful that the stem cells are working!!!!! We decided today to go to MD ANderson in TX and get another opinion on the MDS (blood cancer). They are on the cutting edge of treatments.

MY PET IS STABLE!!!! Hooray!! We purposely didn't call for results on Fri. because we didn't want to ruin our weekend. Being I have felt so ill, we assumed the worst. But we were WRONG!!! YEah! Our last appt. with the doc was not a good one. I was told that there was a small possibilty of bleeding to death w/out much warning. More likely however, the tumors would begin to cause a problem w/major organs. We were painted into a corner as there isn't a way to get treatment with my white cells and platelets so low. That was the news two weeks ago but today, with my platelets rising, WE HAVE HOPE!!!! As always, my nurse & friend, Becky, ROCKS!

Thank you for your prayers and concern. Once again, it is working and we are eternally grateful for your support.

Tuesday, November 4, 2008 9:17 AM CST

Does Grant have big ears or does Kate have a big mouth?

Yesterday, I asked Grant if he could name some states? "Minnesota, Florida, Africa, and red states." So I asked him what a red state was: "Where John McCain lives." So what is a blue state: "Where the good people live." Then I started prompting for more states:

Maria: What about the state Timmer was in this summer?
Grant: Alaska!
Maria: Sarah Palin is from Alaska too. Timmer got to talk to her when he was there.
Grant (turning to Timmer): Timmer, did she tell you any lies?

OK, if you don't agree with Kate's politics, it's probably not as funny. She obviously does not hold back on her opinions in her home anymore than she holds back on them on this site!

No matter what your politics, GO VOTE, and enjoy the right we have to disagree with each other in such a civil manner in the United States.

Maria

P.S. Oh, yeah, Kate! They will get the PET scan results at her doctor appointment on Weds. Her platelets held their own all weekend, which is the first time she hasn't had to have a Monday morning platelet lunch in weeks! Hope continues to survive.

Sunday, November 2, 2008 10:36 AM CST

*new photos*
After a week of throwing up, I had the PET on Friday. I purposely didn't ask for the results as we wanted to have a great Halloween w/Grant. We should get the results on Monday.

The stem cell transfusion went well. It will take 7 to 30 days to see if they took. I have had a couple of transfusions since but prior to the stem cell re-infusion, I was getting platelets nearly every 24 to 48 hours. We really need this to work!!!

We will write more after we get the results on Monday. Thanks for your prayers.

Hope you had a great Halloween! Grant LOVED the day and night! He went a Wolverine from the X-Men (which he had never watched before??).

Grant started calling Obama "Rocko"! I love it! Go Rocko!!!!

Kate

Sunday, October 26, 2008 8:29 PM CDT

Be sure to check out bottom picture under "pictures" tab. It is a great one of my Mom, Grant & Max (Sarah's 7yr.old).

We have had a crazy, busy couple of weeks. Sarah, Kurt & Max were here from Seattle for a long weekend. Neil, Tori, Lisa & Espen along with Steve & Sandy and my Mom joined in on the fun. We had a blast hanging out with the kids! Grant was ecstatic to hang w/his cousins for the weekend. We all wish Sarah & family would move back to MN!

Medically, not too much has changed. We spend nearly every day at some type of appointment or on the phone w/the insurance company. I would never have dreamed that having the "c" is more time consuming than having a full time job and it is most certainly less rewarding. Max & I were watching a movie last night while Brett was giving me I.V.fluids when Max asked if having cancer was annoying. He is a perceptive little man.

I had a platelet transfussion every day for a week. Last Wed., we spent the day at the U. to get my own stem cells re-infused (we preserved healthy cells before the CA treatment). It will take 7 to 30 days to see if they work. The U. doc wasn't too optimistic but I told him that I always fall in the margins - good or bad - so, the lower the chances, the greater the opportunity for success.

The impact of the radiation mix-up is...I can't come up with an adjective to adequately describe it. I am not one to use swear words often but many, many come to mind. My Dad used to tell me that swearing should only be done on the most horrific of occasions and that any use otherwise, shows a lack of vocabulary. I think it's use falls under both categories this week.

We will continue to draw labs three times per week. We will also do a CT sometime this week. We will let you know once it is scheduled.

It has been a difficult week but we promise to continue to buy green bananas.

Thanks for the prayers and love sent our way. We are forever grateful

Kate

Tuesday, October 21, 2008 7:50 PM CDT

Very funny...

I will get my stem cells back from the UofM tomorrow, Wed. Write more later. Kate

Thursday, October 16, 2008 4:50 PM CDT

Kate and Brett have had a rough week with doctor appointments and hospital visits. The three doctors she has been working with (Dr. Bender, the U of M doc and her oncologist) have all told her they have no new plan for her treatment. Essentially, the issues with her platelets are going to prevent them from trying new things (if they had any to try). So here is the new reality: her platelets are being eaten up very quickly. They are going to try giving her platelets every day from now through Tuesday to see if they can somehow kick it back to normality. Otherwise, she will likely need platelets every 48 hours or so from now on. The risk now is that she could bleed out should the platelet count get too low.
They also found that her bone marrow is showing she has MDS (caused by her treatments). They plan on a new scan on the 28th or 29th to see what the tumors are up to. Other than that, platelets will be the immediate concern.

Obviously, this is not the direction we were hoping for. I'm guessing I screwed some of this message up and Kate or Brett can correct me later, but wanted to get it out to you.

Cute Grant story: I mentioned to Kate that a friend named Michelle was coming over. Grant looked up from his breakfast and said, "Maria, is that the same Michelle that Barack Obama fell in love with?"

Keep those prayers and positive thoughts coming!!!
Maria

Quick note from Kate: Did
anyone watch Letterman last night? Pretty good! Here is an excerpt from Factcheck.org but first, Did you know that McCain was the keynote speaker for Acorn in 2006?? My how his mind has changed. Neither Obama or McCain have any close ties to Acorn. They BOTH have some interaction in the past but nothing related to this years troubles.
From Factcheck.org:
October 10, 2008

McCain cranks out some false and misleading attacks on Obama's connection to a 1960s radical.

Summary
In a TV ad, McCain says Obama "lied" about his association with William Ayers, a former bomb-setting, anti-war radical from the 1960s and '70s. We find McCain's claim to be groundless. New details have recently come to light, but nothing Obama said previously has been shown to be false.

In a Web ad and in repeated attacks from the stump, McCain describes the two as associates, and Palin claims they "pal around" together. But so far as is known, their relationship was never very close. An Obama spokesman says they last saw each other in a chance encounter on the street more than a year ago.

McCain says in an Internet ad that the two "ran a radical 'education' foundation" in Chicago. But the supposedly "radical" group was supported by a Republican governor and included on its board prominent local civic leaders, including one former Nixon administration official who has given $1,500 to McCain's campaign this year. Education Week says the group's work "reflected mainstream thinking" among school reformers. The group was the Chicago Annenberg Challenge, started by a $49 million grant from the Annenberg Foundation, which was established by the publisher Walter Annenberg, a prominent Republican whose widow, Leonore, is a contributor to the McCain campaign.

(FactCheck.org, which is nonpartisan, also receives funding from the Annenberg Foundation. But we are in no way connected to the Chicago Annenberg Challenge, which finished its work long before we came into being in late 2003.)

For full details, please read on to our Analysis section.

About Acorn:

arack Obama Never Organized with ACORN

Discredited Republican voter-suppression guru Ken Blackwell is attacking Barack Obama with naked lies about his supposed connection to ACORN.

� Fact: Barack was never an ACORN community organizer.
� Fact: Barack was never an ACORN trainer and never worked for ACORN in any other capacity.
� Fact: ACORN was not part of Project Vote, the successful voter registration drive Barack ran in 1992.

In his capacity as an attorney, Barack represented ACORN in a successful lawsuit alongside the U.S. Department of Justice against the state of Illinois to force state compliance with a federal voting access law. For his work helping enforce the law, called �Motor Voter,� Barack received the IVI-IPO Legal Eagle Award in 1995.
***
Here is what one site says about MDS:
What is MDS?
MDS, or myelodysplastic syndromes, is a group of bone marrow diseases. Normal bone marrow produces three different cell types that help make up the blood - red blood cells, white blood cells, and platelets. In MDS the bone marrow is "injured", that is, loses its ability to produce normal cells of one or more of these types. The diseased cells are called myelodysplastic cells.
MDS is primarily a disease of the aging, most patients being over 65. MDS does not necessarily shorten life expectancy. The bone marrow�s failure to produce normal cells is a gradual process, and the elderly often succumb to other diseases before MDS takes its toll. It is possible, however, that in time the bone marrow will fail completely, making patients unable to fight infection or prevent bleeding. There is also the ever present risk of MDS progressing into acute myeloid leukemia (AML), which does not respond well to chemotherapy. AML is a bone marrow malignancy where the marrow is replaced by a population of extremely immature or primitive "blast" or stem cells. Therefore, there is a severe shortage of normal cells. But the majority of patients, roughly 70�never develop leukemia. In other words, MDS shortens life in some patients but not in others. Eventually 70 to 75�f patients with MDS succumb to either complications or progression to AML.

Thursday, October 9, 2008 11:57 AM CDT

Another busy week of Dr. appt's and family. We had a great weekend supporting Tori, my sister-in-law, as she prepared to run her first marathon at the age of 52! My brother Joe flew in from WA to surprise me & my Mom. It is always so much fun when the Hunts all gather. Joe brought his guitar and my brothers reminisced about there early 20's and sang a few Dillon songs. We also had many funny mishaps as we attempted to meet Tori along the Marathon path. Tori finished the race in 4hrs and 42mins. Not bad for an old lady!!! (Just kidding Tori! Tori is in better shape than most 18yr olds!) Congrats to Tori & Lia Christenson - & all who ran - for finishing the Twin Cities Marathon!!!

The Doc appt's haven't led to any treatment decisions. I had a platelet transfusion last Mon., last Fri. and again on Monday night at the ER. My gums began bleeding early Mon. but we decided we would wait until Tues. am to check my counts being that I had just had a transfusion three days earlier. Still bleeding, I put Grant to bed that night. I came out w/a raging headache so decided to head to the ER. Abbott is such a great hospital. They quickly found that my platelets were at 8, hemoglobin at 7.2 (my lowest yet) and neutraphils were 0.3. They decided to rule out a brain bleed by scanning my head. No bleed but they saw an "artifact" in my left frontal lobe. They doubt it is anything but now I need to do an MRI rule out a potential metastases. We're not worried about it but we will take all the positive thinking we can get. The timing of this worked out well because we were home by 6am so Grant never knew we were gone (Joe was here overnight).

We ARE worried about our lack of treatment options. We had counted on the radiation to give us enough of a break for my marrow to heal and receive chemo. again. We hoped to get 6mths to a year off of treatment and by the time we needed to treat, my blood cells would be back to a healthy range. Obviously, the mistake took away this option - which we believe robbed us of a couple of years. We are waiting to find out what the internal investigation brings. More importantly, we are waiting to see what treatment options the doctor�s bring.

Grant is really into play dates these days. It is hard because I am usually too tired to reciprocate and have kids over to our house. I hate the sacrifices Grant has to make because of the awful "c". He goes to Gracie's a couple of times a month and loves it but I know he would like to do more. He often will say "it's not fair that we don't have other kids living at our house." With all that said however, he is the happiest, healthy little man and doesn't seem to have a life much different than other four year olds. Brett and I work very hard to not allow the "c" in our home. Other than the many appointments, it doesn't seem to affect him much. He continues to fill our lives with immense joy and laughter!

We see Dr. S. again tomorrow and will update as we get info.

Enjoy the beautiful fall days!
Kate

Wednesday, October 1, 2008 10:41 PM CDT

Another moment that makes me giggle....

**As you watch tonight's debate, remember that there is a 25hance that she will become our President. Does she have the knowledge, judgement and intelligence necessary to heal our Nation?**

***Bone marrow biopsy went well. They put me under this time so it was much better than the first two. We hope to have results late Fri. or Mon. Still no idea of how to proceed to get the tumors stable. The radiation was working but the mj. tumor was left out. Now, we are unable to treat w/radiation due to amt. local organs have already received. This is catastrophic to my care.***

We need as many laughs as we can get. The doctor appointments have been many but we still have no plan and very few options. I am scheduled to have the lovely bone marrow biopsy tomorrow at Abbott. For those of you who have been with us since the beginning, you will probably remember that these things HURT! I asked to be put out! I asked that last time and the BMB doc said no. We'll fight harder this time:)

As I have said, the radiation was working but there was a bump - mountain - in the road. We are devastated and angry. We thought the fact I have stem cells stashed away at the U was my "ace in the hole." It's looking more and more like a 4 of hearts?? We definately need your well wishes and prayers. I feel like the rug has been ripped out from under me and I want to know why.

Grant has been a bit off this week. It is difficult to discern whether this is a stage, is he tired from his new school or is he reacting to our reaction about the cancer. Of course he is my light and my life but he seems to melt down easily this past week. But then again, so do Brett & I.
Last week, he begged me not to take him to school. He told me that he needed to stay home with me to help take care of me (I had been ill that morning). Later, he was insistent that he stay by my side throughout the platelet transfusion. He is such a sweet child. It breaks my heart to know he thinks about the "c" as much as he does.
Grant had a "date" with TImmer last Saturday. Timmer asked Grant if he has a girlfriend. He nodded & said. "Yep, I sure do!" "Grace & Carolyn. They are both nice but you should meet Grace! She is wonderful. I think you would really like her!" Amused, Timmer said that they should go on a double date together. Grant enthusiastically said "yes - oh, you will really like Gracie!" "But I would like to sit in the middle of the girls and you can sit on the end. OK Timmer?"
Timmer said it was like he was talking with one of his friends!

Love to all of you. Thanks for the many kind words and prayers.
Kate

Wednesday, September 24, 2008 8:05 PM CDT

***We met w/the doctor on Friday evening (from 6:30pm to 8pm). Not good news. Dr. S. is out of town but Dr. Vic suggested we try to get ahold of him over the weekend. We will try to do a stem cell transplant and hope it holds so we can begin chemo. again. It wasn't that the radiation wasn't working. That's probably all I should say about it at this time. Thanks for your prayers.
-Kate***
**I posted wrong clip. It was a good one as well but this one makes me smile. Here it is: Things didn't go well today. We will write more over the weekend. At first, this interview made me giggle. After reflection, I told Brett, "Ahh. Now she had to go and make me feel sorry for her." You've probably seen the interview. If no, here it is:

We received a call from one of the radiation oncologists last night at about 8:15pm. History has shown that is never good to get a call from a doctor that late at night. A very long story shortened, one of the main tumors is growing despite treatment. It seems that it should have been included in the radio-surgery but was somehow left out (we are still trying to figure out how). The main concern is that they are unsure how to radiate it without hurting surrounding organs/tissue. It would have been ok had they included it w/the first radiosurgery but at this point, the surrounding areas may have taken their max. dosage and may not be able to handle any more.

For now, radiation is off until they can come up with a plan. Thankfully, I have had stomach pain which alerted us to the issue. The doctor, with whom we met today, is fantastic. He is extremely intelligent but what impressed us was his commitment to being thorough and his compassion for our situation. At one point, I said that we might as well go for it despite the potential damage to surrounding organs because radiation is our only option for treatment. I was a bit choked up as I said it to which he responded with watery eyes, "This may not be fair for me to say but I think I am as upset, it not more, than you are." He is obviously vested in his patients and it showed in his dedication to finding a plan for me.

We probably won't know anything until Monday. In the meantime, I had another transfusion and it has been a pretty horrible week - in many regards. I know it isn't a good thing to postpone further radiation but I am looking forward to a few days off. Brett & I could use a "stress - break" - Grant too.

On a much happier note - Steph & Andy Munyon had a baby boy - Drew Steven Munyon! Congrats guys! We can't wait to meet the little man!

I am sure people are tired of the bits of political commentary but I feel it is so important that people pay attention this year. I used to respect McCain a great deal but I am now fearful that something has changed him & I am terrified of Palin's political history (although I am guessing I would like her as a person). Read up - pay close attention and vote! As you can imagine, I spend a great deal of time pondering what lies beyond this life... Are we reincarnated - the purpose (in my mind) being that we must learn certain lessons before reaching the highest levels of actualization and moving on to "heaven". If this is so, I am terrified that I may be reincarnated and born in an impoverished nation in Africa; or in lands where poverty has created terrorists such as in Pakistan. In Afghanistan, most babies don't make it to their first birthdays... I can't imagine the lives millions live... We are so very blessed to be born in the US. Obviously I am simplifying my thoughts but you get the picture. There is a lot going on in our world today and we need a true leader - someone who will restore our status in the world and look for peaceful alternatives to our problems. My opinion isn't worth "a diddly damn" as my Mom would say - but I have a lot of questions.

I'm not sure where I am going with that last paragraph and the grammar is horrible:)

Grant is melting so it's time for bed. Grant wishes you a good night! Love to you,
K.

Friday, September 19, 2008 10:59 AM CDT

If you think all I do is give airtime to the left, here are three prominent conservatives, including George Will. Good video:
http://www.huffingtonpost.com/2008/09/21/abc-panel-tears-into-mcca_n_128055.html

*Feeling pretty crummy but hanging in there. I had my second platelet transfusion today. Brett promises to write more tomorrow. Love to all of you. -K*

Sorry for the lack of updates. Maria has been swamped at work, I haven't felt too great & Brett has an aversion to posting. Here's the scoop...

I came out of the four days of stereotactic radiosurgery relatively unscathed. I needed a platelet transfusion on Tues. and have felt extremely tired and nauseated but we had no emergencies or hypertensive crises. I am now getting 40 days of general radiation to my abdomen. Mon - Fri only. Keep your fingers crossed. On of my new nurses said, "Oh honey, you have certainly been through a lot, haven't you." I laughed because she doesn't know the half of it. We are making it through however, and that's what counts!

Grant LOVES his new pre-school. He goes to Mt. Olivet Nursery school at the church on 50th. I asked if he had a good day and he said, "I had a super duper day!" It has been such a relief. I wish I would have changed schools and classrooms a long time ago!

Grant's "c" radar has been high. I was feeling exceptionally crummy last Sun. and told Grant I would read bedtime story's w/him in my bed. Grant said, "Oh no Mommy. You're sick AND you have cancer??" He then whispered to me that he would rub my forehead and make me feel all better. He repeated over and over, "You're ok Mommy. You're ok." (Something I say to him when he is ailing). He is such a sweet and sensitive boy!
Earlier this week, he & Brett walked over to a neighbor's to see if G's friend, Carolyn could play. Carolyn's brother answered and told them she was sick and unable to play. Grant said sadly, "Wouldn't it be sad if she had cancer?" Her brother said, "yes. It sure would be."
It is strange. We really don't talk about the "c" w/Grant. He knows that I started a new medication but other than that, I don't think we are acting too different. He is very perceptive. It is beautiful as well as frightening.

Speaking of beautiful, my brother-in-law and his wife, Nate & Heather, are hosting a walk-a-thon for Heather's cousin and family. Her cousin, Greg Adelman has been battling chronic progressive MS (Multiple Sclerosis) for 10 yrs and is struggling. Greg and his wife, Brenda have 3 young children and I am told that they are wonderful, kind and thoughtful young people. The walk-a-thon is being held Sunday, Sept. 28th at 10 am around Hyland Lake in Bloomington. If you would like to support their 5k walk/run/bike, please email:
hccm@comcast.net
They have also set up an account so that people may donate directly to the family. Please email Heather at the email address above or call Nate for more information. Nate: 612-508-5888. Brett & I have been so blessed to have help from the fundraiser put on by friends and know we couldn't have survived financially w/out it. We know first hand how medical bills can be devastating. So, if you know of anyone who is interested in MS or is simply wanting to participate, please pass this info. along. THANK YOU!

Maria must have sent out a note about meals again. Thank you to all who have done so much to help! I hope to regain strength after radiation ends in mid-Oct. Thank you!

Wishing you a beautiful, sunny weekend!

Wednesday, September 10, 2008 2:50 PM CDT

THURSDAY UPDATE (from Maria):
Kate asked me to fill in for her because she simply had to take a nap! Despite her platelet count, the did do the first day of radiation surgery today. It was uncomfortable for her, primarily because she had to lay on her back in a stretched position which is the worst for her abdominal pain. It lasted about 25 minutes. They will now do 3 more days of the "surgery", then do 20 days of regular radiation. The surgery goes after her primary tumor in her abdomen and the regular treatments go after all the others. They will be watching her blood pressure and her platelets for any signs of trouble. Her main side effect will be extreme fatigue. So here we go, folks! Keep the positive energies going and let's knock these devils back even further!

WEDNESDAY
Whew, I think I lost my stomach on that last roller coaster drop! Yes, the ride continues and it seems nothing along this journey comes easy. The good news about that is, in the end, it all seems to work out for the best.

We did our dry run for radiation today. The run went well and we were getting set up to begin actual treatment tomorrow. Unfortunately, my platelets dropped to 23 so we may not be able to begin as expected. The cut-off for treatment is usually at least 50 but they agreed to treat if I am slightly below. I don't think 23 will fit in the "slightly" category.

The Radiologist wasn't in today so we will have to wait until tomorrow. The other concern is that the tech told us that we will most likely do the radio-surgery tomorrow (she wasn't 100�ertain though). That is not how we left it w/the Radiologist. It would be fine except that the tumors secret a hormone which can cause a huge spike in blood pressure, resulting in a stroke or worse (similar to what happened when I was pregnant with Grant). Not expecting to do this part of the radiation for a month or so, we haven't worked out the "plan" should something happen. So, we wait...

We will write tomorrow and let you know if we are able to proceed.

Grant had his first day at his new pre-school and loved it! We aren't entirely sure how we will handle child care issues w/my new treatment plan but I still hope to be able to care for him on my own while Brett is at work. Brett is working 2 days/week at the moment and is really happy at the new clinic (Valley West Chiropractic).

Thank you for the many well wishes and prayers. We are grateful! Happy BDay Jeff & Sandy!!!

I am sure you've noticed that I am frustrated by several claims made at the RNC last week. Here is a non-partisan org. that does fact checks. A good way to discern fact from fiction:
http://www.factcheck.org/elections-2008/gop_convention_spin_part_ii.html

http://www.youtube.com/watch?v=WMPYkNQlJMM

Kate

Friday, September 5, 2008 11:29 PM CDT

A new irritant - Pallin & McCain are going hard after Obama for ear marks sought. RIDICULOUS! According to a non-partisan watch group - Pallin has requested $197 MILLION dollars this in earmarks for Alaska - which is MORE PER CAPITA THAN ANY OTHER STATE - and this is only for this year! She is making things up!!!! Pallin also states that she is against these ear marks and that she said "no thank you" to the money for the "Road To No-Where" . NOT TRUE. She originally pushed to get this money. After realizing it would not work, she than backed off BUT KEPT THE MONEY ANYWAY! She did not return it. I think it is ok for people to change their opinons as they mature or as new facts come to light but Pallin keeps lying and I am disgusted by it! Is anyone else? I used to respect McCain but am bewildered by the type of campaign he's forged.

Good stuff from John Stewart:

Good stuff...
While thinking of good stuff, did you know that "Cindy McCain came under criticism for wearing an outfit that some estimate was worth $313,100 at the RNC on Monday night." - Huffington Post

**It's not that I care that she is rich, what I care about is the fact that she and the campaign continue to attack Obama for being an elitist and claiming that he is not in touch with the American people. Really? Obama grew up on food stamps as a child. Obama put himself through college and law school (top of his class I might add). Obama worked as a Community Organizer in the S. side of Chicago when he could have go on to make millions as an attorney on Wall Street (he has since made his money by writing two books). Elitist? I don't think so. Some might say he is an Elitist based on his intelligence. Since when did we Americans decide that it is a BAD thing to be smart? Wow - I sure would hate to have a President who is intelligent!

From Vanity Fair:
"To Cindy McCain, $300,000 is the price of an outfit.

To most Americans, $300,000 buys ...

... one and a half houses, given the national median home price of $206,500.

... a year's worth of health care for 750 people.

... the full array of back-to-school supplies and clothes for 500 kids.

... enough gas to drive cross-country 543 times.

... 365 round-trip flights from Washington, D.C., to Anchorage, Alaska. (John McCain should have splurged on at least one.)

... a three-course steak dinner (at Mat-su Resort) and a movie ticket (for the Mat-su Cinema) for every man, woman, and child in Wasilla, Alaska.

... enough money for three Troopergate investigations." By Vanity Fair Mag.

(Sorry Alissa, but you asked...)

We met w/Dr. S. again today. We were basically seeking his approval/opinion whether the radiation route is the best way to go. He confirmed that it is the best plan for now - he also confirmed that it is our only plan for now. For some unknown reason, my platlets dropped yet again and are now at a measly 26. It solidified that we should not wait for my blood to heal and do chemo. Dr. S's biggest concern about the radiation is the blood issue. We discussed using our "ace in the hole," and do a stem cell transplant if my bone marrow is pushed to the point of no return.

I am guessing most of you can tell that I am not too thrilled with the plan of attack. I can tell you that I will wake up on Wednesday morning and will be on board 100� My biggest struggle is the fact that we are stuck and that this is truly the only option for treatment. For now I will focus on having gratitude for the fact that at least we have an option.

Grant is doing well. Last night I told him that it was late and that we should each say our prayers quietly in our mind. He didn't go for that and wanted to say his out loud. He prayed, "Dear God. Thank you for this wonderful girl (and hugged my head). How about if you and me and Jesus and Mary work together and make my Mom's cancer go away 'cuz I hate cancer." It is amazing to me, how our little man is so intuitive. We have not discussed my latest test results with him nor have we shared our new treatment plan (we will talk with him on Tue.). He is such a sweet, loving boy.

Grant is starting at a new daycare on Monday. We met his new teacher today and she seems fantastic! She looks nothing like Michelle Oboma however (we wrote in previous post how he asked if M.O. is his new teacher).

We have enjoyed watching all of the speeches from the conventions! Alissa, we will have to catch up in person as I am sure my thoughts on Palin's nomination will offend.

Happy Bday to my big brother, Thom!

Have a great week! Kate

Friday, August 29, 2008 8:29 PM CDT

We met w/Dr. S on Tues. as planned. As we expected, chemo. is not an option at this point. Dr. S. felt that the tumors have shrunk enough over the past several months that radiation may be an option. I have had several types of radiotherapy but that is quite different from general radiation. We met w/Cyberknife people last year but were turned down due to the location and the extensiveness of the disease (is that a word?). So,,

Today we met w/the Radiologist and it was decided that I am a candidate for radiation. We will approach it two different ways - Starting on the 10th, I will have general radiation therapy every day for twenty days. This should kill off any tumors, including those that are too small for the PET to have picked up, in the area. After the 20 days, I will Stereotatic radiosurgery (SRS) which delivers an ultrahigh amount of radiation to a specific area. My spine & bowel are in the way of the tumors but they hope to minimize the amount of radiation they receive.

I am a bit leary of our new plan. First, I believe that my body is telling me that we need to attack the 'c' systemically and that I need to have chemo. in order for it to work well enough to make a difference. Second, like most doctors,the Radiologist knows little about paraganglioma. She kept saying things like, well, the other paraganglioma I've treated were different than yours or would refer to the tumors as glioma tumors - which we have been told that they are not even in the same family. Anyone that says they have treated paraganglioma has not likely treated someone with paraganglioma..

Grant is ready for bed so we will add more later! We are at my Mom's for the long weekend and are thrilled to be at the lake!

Have a wonderful Labor Day weekend! Our prayers for safety go out to all touched by the Hurricane. Much love to all,
Kate

Sunday, August 24, 2008 8:49 PM CDT

We did receive the PET results on Fri. We didn't post because we needed some moments to process the results. The day before the scan, my friend asked if I were nervous and what we expected to see from the PET. I told everyone that I believed, at worst, the scan will show stable tumors and at best, slight regression/shrinkage. My last tumor marker certainly supported this belief. Once again, I defy science.

With a tumor marker at 14 (which is NORMAL), the PET sadly shows progression/growth. Dr. F. warned us that we must not stop chemo but I think even he would be stumped by this. We will meet w/Dr. Schwerkoske on Tuesday and hope that he will have a plan. I doubt chemo. is on the table due to my low platlets. Both Brett & I experienced the sick feeling - feeling as though you have been hit in the stomach with a baseball bat - similar to the one we felt at the Mayo when we first learned the severity of the 'c'. We definately did not expect to see growth w/this scan.

We had plans to meet friends camping for the weekend. Depite the news, we decided to go and we had a great time. It was so relaxing and wonderful to spend time with good friends. Grant loved every moment of the trip. He got to swim, fish, tube, hunt for bugs, sleep in his sleeping bag, make smores and fawn over his latest crush, Emma. I loved every moment of last night. I got to sleep next to Grant and look at his beautiful face whenever I needed a smile. Thanks for the weekend everyone!

We will update after our mtg. with Dr. S. With a little luck, Brett & I can spend a couple of days in D.C. and then immediately begin some type of treatment. We were overly confident about my health and didn't jump on the D.C. thing as quickly as we should - lesson learned. Oh well. I am not so sure I want to leave Grant for the couple of days necessary should we go. I wonder if Grant would enjoy the Smithsonian??

Live your love - every day.
Kate

"Sweet Misery
2006 - Rating: TVPG - Advisories: AC
The artificial sweetener, aspartame, is the bedrock of the diet industry. Found in everything from fizzy drinks to vitamin pills and marketed under a variety of different names, it is difficult to detect and even harder to avoid. But how safe is it' Does it really cause brain tumours, blindness and other serious illnesses' This shocking documentary investigates how the FDA came to approve such a potentially dangerous product."

Tuesday, August 19, 2008 5:14 PM CDT

***Wed - Platelets are holding at 43. Hemoglobin is 9.4 & Whites are up to 2.? I have some sort of infection at my port site but not sure what exactly. We will see Doc. on Tues.***
** Oh yeah, PET scan is this Friday. We are hoping that my tumor marker results will be evident in the scan! **

I am trying to get new pic's on the site but am unable to download from Snapfish. Ugg... I just wasted an hour! Frustrating! I will try to figure it out later.

My counts dropped again. We will re-draw tomorrow. Other than feeling tired, I am doing very well. We spent the weekend at my Uncle Monte & Aunt Donna's. We weren't there five minutes when Grant was stung by a bee immediately below his right EYE! Nothing like starting out the weekend right! We were able to salvage the weekend however! Grant caught five fish and went water tubing for the first time. Before he got on the tube, he asked Uncle Monte to go slow at least sixty times! Once on the tube, between his giggles, he yelled out, "faster! faster!" at least sixty time! We had a great time listening to my Uncle's stories!

We ended the weekend at a get together at Jeff & Alley's. Karin & I started a spirituality/discussion group made up of eight women a couple of years ago. It was so much fun to get the families together! I put grant to bed that night and he declared that someday, he would marry Gracie! He usually tells me that he & I will get married but I have been replaced!

Happy 40th Rachael!

Enjoy these last days of summer! Much love,
Kate

Thursday, July 31, 2008 9:21 PM CDT

Mon. Aug 12th
We spent the weekend at the Bennes's lake cabin and had a fantastic time! I will post some pic's when Julie emails them. The Sirjord's & Bennes's attended the MHD Class of '88 reunion & Stickman (The Phones) played!!! It sounded like it was quite the party! I can't believe that it has been 18 years since I graduated from high school - I can't possibly be that old?? I am happy for each year that I age however. It certainly beats the alternative!

My counts are finally high enough to have chemo ( I haven't had it since June 5th) but the PA said that we are officially done - At least until my next scan which will be on Aug. 22nd.

This morning Grant & I were watching the news and Grant asked, "Does Barack Obama know that we are the good guys?"
"What do you mean?" I asked.
Grant replied, "Well, do we have to hang a flag outside or can he see us and know that we are the good ones?" Still confused, I asked him to tell me more.
He then said, "Well, I don't want him to think we are like Bush or McCain or anything."
I explained to Grant that McCain etc. are not "the bad guys" and that we just have some different ideas about the way the US should be run.
Grant said, "Well, let's just hang a flag outside, a big one, not just a kid one, so that Obama knows we are here and doesn't forget us." It is always so interesting to hear what is going on in his head! The other day, I heard Grant ask "are panda bears real?" I began to answer and he said, "No Mom, I am asking God". He asked again and waited a minute and then told me, "Yep. God says they're real." and walked away.

Enjoy the beautiful week! I go to MOHPA every Wed. so we will post again soon.

Happy Birthday Alley, Juli J. & Lynn!

Kate

Last Friday, I took the first tumor marker test since last fall. The range for a "normal" Chromogranin A is 0 to 37. When I was initially diagnosed, my marker was at 348. Last fall, it went to a whooping 1600! Today my tumor marker is at... Drum Roll Please....... 13.7!!!!!! Hooray! We could hardly believe it - I have never had a "normal" marker test! What does this mean? We aren't really sure as the PET still shows quite a bit of metabolic activity in my abdomen. (BUT, my lungs, spine, neck, arms and hip are all clear!) I am scheduled for another PET on Aug 22 and we are hoping that the tumor marker indicates that the tumors are still dying and that the PET in Aug. will show further regression.

Dr. F. from San Francisco called to congratulate us and to remind us that we must not stop chemo. I told him that we already have due to my uncooperative bone marrow. He agreed that my marrow needs a break but suggested that we start up again as soon as possible but that we spread out the treatments. He suggested that we have chemo every 6 to 8 weeks rather than the 21 days that are indicated. I laughed at the 21 days. My marrow usually takes 4 to 6 weeks to repair. So, we will need to discuss w/Dr. S and find out what he thinks.

Friday, July 25, 2008 8:20 PM CDT

We are now 7 1/2 weeks out from my last chemo. session. As you probably remember, I am supposed to have chemo. every 21 days although that has rarely happened due to the enormous effect it has on bone marrow. Brett shared that I had talked my Oncologist into one more chemo session (I have had 9 - we were trying for 12) but after this week, my Doc. is no longer comfortable with that idea. Both white and red blood cells can be artificially inflated with drugs but platlets are immune to such things. Currently, my platlets are holding at 25 - after 7 weeks of rest and 9 blood transfusions. Thus, Dr. S. said that the time has come to stop treatment for the moment. I did manage to talk him into giving me one more week to see if we can get my white cells and platlets up to their minimum numbers needed for one more session. It is unlikely that my platlets will jump high enough by Wed. but I figured that it is worth the shot. So, we will reconvene on Wed. in hopes that my bone marrow will break it's strike will finally have the necessary blood counts. I doubt there are many who would be disappointed that they can't continue chemo. but I am often living in the margins of life.

If we are truly done with chemo, Brett & I intend to travel to D.C. I have never been and we have always wanted to go. The medical plan is that we will scan (CT/PET) every 8 weeks and pray that the 'c' stays stable. Brett & I have been a little too comfortable with the chemo regime and need to get back to our research for new treatments. I also have been terribly lazy about juicing, Qi-Gong and other therapies that have helped in the past. We will let you know when we decide to go to D.C.

Grant is doing well. He has become quite the comedian and will tell endless knock-knock jokes to anyone who will listen! He also is into making up "rock-n-roll" songs and enjoys singing them at the top of his lungs and "rock'n out"! Conor took care of Grant last Sun. while we were at the Neil Diamond concert (which was fantastic!). Grant asked Conor if he had heard of George Bush. Grant then said, "He's not a bad person. He just makes bad choices". He is a little sponge! We have stopped listening to the news when he is in the room because there are too many ugly things going on in the world and he doesn't miss a beat. He recently asked me, "What's a Shiite Mosque"... I told him to go ask his dad :)

Blessings to all of you,

Kate

Thursday, July 10, 2008 10:08 PM CDT

It has been a long time so let's work backwards.
Tomorrow Kate will have her 6th platelet and 2nd red cell transfusion since her last round of chemo. That isn't good by the way. Previous rounds have occasionally required a transfusion here or there but nothing like this. Her bone marrow seems to have had it with all of these treatments.
Today we went to have some imaging done on the port in her chest. It too seems to be acting up a bit lately. Thankfully, her port was having a better day and did not require a radiologist to manually reposition it (Kate still states that was the most horrifically painful part of this whole ordeal). I could see the relief on her face when she was told it was fine and she could go home.
Yesterday we came home from a week up at "Espen's house" as Grant calls it. A week at the lake was wonderful. We haven't done that in a long time.
A week ago before leaving for the lake, Kate had to have her blood topped off again- we headed North directly from the hospital.
Two days before that we met with Kate's oncologist. He confirmed the good news from our previous scan. That is what makes all of these transfusions and recent increased nausea more pallatable. He confirmed our suspicions that we might be running out the string on this chemo thing. Given the fact that her blood seems to be taking longer and longer to rebound and that her counts drop lower and lower, we were not surprised when he stated that the time for a break had probably come. The anxiousness of stopping treatment was overtaken by a sort of relief in my mind. Kate has come so far and endured so much- as anybody who has had chemo can attest. A cautious break with the safety net of a scan in the near future seemed like a reasonable plan.

Kate talked him into giving her one more round of chemo instead.

There are no words that come to mind to explain her courage.

Sunday, June 29, 2008 7:43 PM CDT

I am trying to change the photos on this site but it isn't working. My 15 yr old nephew is practically a computer genius however, after "cleaning up" our laptop for us yesterday, it no longer recognizes my memory card from my camera.

We did get prelim. results yesterday and are happy with it. All we know at the moment is that there are no new tumors and that there is "slight" regression, particularly on the left side of my abdomen. We should get the full report tomorrow and Brett has promised to give the update. Yeah! I prefered the word "significant" over "slight" but we will take what we can get!

Unfortunately, my platelets are not holding and I have now had four blood transfusions in the last two weeks. We may have to have a more specific transfusion that will better match the donors platelets to my own.

We will write more tomorrow! Congratulations to Maria for being chosen the Alumni of the Year at St. Ben's!! You deserve it!

Have a great night!
K.

Sunday, June 22, 2008 9:37 PM CDT

Well, I thought if I waited long enough, Brett would finally write the next update. He has promised to write later week however. I always love it when he posts.

We had a great Father's Day. The day began with Grant wishing Brett a happy Father's Day. He then leaned in to me and asked, "Which is bigger, 100 or 1,000?" After getting the answer, he said "Mom, I love you to the stars and back 1,000 times! Dad, I love you to the stars and back 100 times!" We celebrated the special day at Minnehaha Falls and had a wonderful day together as a family!

Last week was a pretty busy one. Brett is now back at work and I have Grant on Monday afternoons and Thurs. mornings. We had great fun ALONE! It is wonderful to feel well enough to be able to care for Grant with no one else in the house. I was exaused and my counts were in the tank but it was great fun. Unfortunately, I ended up needing two platlet transfusions. I started getting nosebleeds on Thurs that wouldn't quit so I ended up at Abbot Hosp. to get my counts checked for the 3rd time that week. Unfortunately, the tech came out and told me that I had to wait as my platlets were in the "critical" range (they often are). My nurse called me on my cell and told me that they were going to admit me as an outpatient. Of course I was supposed to pick Grant up from school. Brett was at work and I couldn't find anyone who could pick Grant up in a timely matter so I ended up leaving the hospital, racing over to pick up Grant. Maria met me at my house and took Grant to her house for a "date." I ended up on the 4th floor which is a holding area for people as they are waiting to get a bed. The nurse came in and said, "I remember you!! Ohhh, you look so great! You were a hurting cookie last time I saw you!" She was really great and genuinly thrilled to see how well I am doing.

Brett & I celebrated our 9th wedding anniversary on Thursday (despite the on/off bloody noses). Karin invited Grant over for a sleepover so that Brett & I could just enjoy the evening and sleep in (Brett had to work on Friday but he still was able to sleep in a little bit). We went to the Mill City Museum where they have live music every Thurs. and then went to dinner at Azia (thanks for the Bday gift Nate & Heather!). After 9 years, Brett is still my best friend and I am still crazy in love with the man! We are blessed.

Today we spent a great day with the Cebulla's. We met them at a park for a picnic and a swim. As soon as Grant saw Grace, he ran over to her and told her that he loves her. They are such good friends. They see each other at least once a week and it brings me great joy to see how much they care about each other. Karin & I both hope that they marry each other when they grow up (35 or 40 sounds good)!

I go in for blood work again tomorrow and we have another CT/PET scan this Friday. Your prayers and well wishes have worked for us thus far and we ask that you continue to keep us in your hearts and prayers this Friday. I am a little nervous about this one. I fully expect great results but I get a little nervous about the fact that if the chemo. stops working, there are no other treatments at this point. But we don't have to worry about that now do we?!?!

I wish you all great happiness as we enter into a new week. Remember, life is too precious to cry over spilt milk!

K.

Saturday, June 14, 2008 9:35 PM CDT

Hello everyone. We are sorry that we have not updated the site in awhile. I have been holding out in hopes that I could get Brett to write about our trip - he says he will, but the days keep passing on by... Our trip was wonderful however!

I am very saddened by the loss of the greatest journalist of our time, Tim Russert. As some of you know, I have had an enormous "crush" on him for quite some time. When I was first diagnosed w/the "c", my brother wrote T.R. and told him about my crush and my illness. Although I did receive a signed photograph of him, T.R. did not write to me personally. The letter stated that due to T.R's popularity, he couldn't possibly write a personal note to me. I originally thought 'seriously'? He can't spend five minutes to write someone a note who has stage 4 cancer? T.R's death reminds me just how precious, how fragile life is. I was told that I had two years to live -I am still here - T.R. is gone. LIVE every day folks. Life is precious as well as terminal. I am sorry for our entire Nation. I felt that T.R. somehow acted as our moral compass in the world of politics and journalism. I looked to T.R. to broaden my perspective on various political issues. I feel a little lost.

I wish all of you a wonderful Father's day. I will continue to work on Brett so that he will write about our vacation. Photos will be up soon...

Platlets: 25 (up from 13)
White cells: 1.0

Love to all of you,
K.

Thursday, June 12, 2008 6:52 AM CDT

Sorry about the lack of updates. Time does have a tendency to get away from all of us. Kate, Brett and Grant had a fabulous vacation with no medical events! My sister-in-law, Sandy went with them and the word is that all had fun. I'll let Kate tell you the details when she is back to updating. (I'll also make her update the photos so you can get a peek at Mickey!)

Kate came home to chemo, which is why the updates have been delayed. She is having a "normal" chemo run, which means exhaustion, nausea and mouth sores. She is handling them well. We are seeing a quick slide into the low platelets. She has extremely low platelets, so yesterday they gave her some down at the hospital. That will pick up her energy level.

The docs are re-emphasizing the need to keep germs at bay since she has now had many rounds of chemo and her system is comprimized. If you visit, you will now be greeted by a sign to remind you of that fact. In other words, shoes left at the door, blown kisses only, air hugs only (no actual touching), washing hands upon entry and NO COLDS. If you don't feel right, please call instead!

Brett is back to work 2 days a week which is great for him and his patients! Despite the chemo, it is beginning to feel (dare I say it?) somewhat normal again in the Hunt-Mortenson household. Now if we could only have a normal summer!

More to come about Florida....

Maria

P.S. Our condolences to Lori Malvey who lost her father in the past week. Lori is a very faithful provider of meals to Kate for the past 3 years (a friend from Moorhead). Please send your prayers her way.

Friday, May 23, 2008 8:00 PM CDT

Who knew that the word "hint" would create such guilt? Thanks for the notes!

Brett, Grant & I leave for our vacation to FL on Monday. We will spend the first four days in Orlando, taking in another couple of days at Disney/Sea World and then head South Punta Gorda until the following Monday. We are thrilled to have my Sister-In-Law, Sandy is join us! We had hoped to go somewhere exotic but my Oncologist was'nt too excited about the prospect of our leaving the country. It isn't Croatia but we are really happy that we are able to go and spend time playing in the sun.

To the wonderful people who had volunteered to bring dinner to our family next week; thank you but we won't be here! We will be leaving on Monday, the 26th of May and will return on Monday, June 2nd. We hope this doesn't inconvenience anyone.

We should finally update the pic's on this site with one's from our vacation! We hope you have a great Memorial Day weekend! Much love and peace to all of you.

K.

Wednesday, May 14, 2008 8:04 AM CDT

Happy Belated Mother's Day to all the Mom's & Mom-like figure's in our lives! I hope everyone had a wonderful weekend!

Ours was fairly eventful. We began the weekend at the Humane Society in search of a new cat for Grant. We played with 8 cats before the volunteer brought in a
6 mth. old male, orange tabby. I told her not to bother because Grant was set on getting a female, black & white cat and was emphatic about naming the new cat Bootsie 3. The volunteer hadn't even put the orange tabby down when Grant squealed and yelled out, "That is the love of my life kitty! Let's buy him and name him Tiger!" Tiger & Grant have become fast friends, chasing each other around the house until Grant literally falls over laughing! Unfortunately for Brett & me, Tiger stays up all night crying, trying to get us out of bed to play with him. Yawn....

Brett's Dad, David, has been living with us since the end of April. We decided to take advantage of having someone in the house and went to a movie after putting Grant to bed on Sat. night. Just before we put G to bed, I noticed that my mouth was bleeding. Certain that it would eventually stop, we went to the movie anyway (Baby Mama - not my typical movie but it was quite funny). The movie ended at 11:30 and my mouth was still bleeding so we called the on-call dr. at our clinic. As usual, our date night ended in the ER where they gave me a platelet transfusion to stop the bleeding. The nurse was brutal and it was another reminder of how lucky I am to have such incredible nurses and doctors at my regular clinics.

We didn't get home until 3:30 am on Mother's Day so we were a little tired when Grant woke up raring to go at 6 am. Being Mother's Day, Brett got up w/him while I slept in until 9! We had breakfast w/Maria & Coley and spent the rest of the day hanging out as a family.

Brett had his first day back to work at Valley West on Monday. He got home and took an hour long nap after work! He is really happy being back with his patients. It was an especially busy day because his new clinic accepts almost every kind of insurance out there and Brett had to learn how to do the paperwork on all of them (his old clinic didn't take insurance in the same way). Paperwork has never been Brett's strong point! We are going to buy Troy's 1998 Volvo (Troy is a friend since high school & is also the other Dr. at Valley West). We sold my car last fall, assuming that I would not drive again. With Brett going back to work, I will need a car to take Grant to school etc... I have always wanted a Volvo so I am psyched to be driving again!

I was supposed to get chemo this week but due to low counts; we have postponed it until June 3rd. This will allow us to take our trip to FL (if we can still get a flight). I had to get an infusion of Zometa (bone strengthener) yesterday. We have met many people in the 8 rounds of chemo - Yesterday, a woman named Mary went on & on about how well I looked. She then told me that she didn't think I was going to make it when she saw me last. I have heard this from others in the past but it still shocks me every time someone makes a comment like this. We feel so blessed to be in such a good place at the moment. Brett & I know that this may not last and are doing our best to take advantage of my "health" every day.

We still haven't locked down the dates of our vacation. We plan to make our final decisions today and hope to leave next week. Cebulla's invited us to go on vacation with their family but I had told them to go w/out us because it is so hard for us to make plans. They are now in FL. & I so wish that we had found a way to join them! Oh well, there is always next year!

I noticed yesterday that this site has over 350,000 hits! So, we know that pp. are still checking in but hardly any one is writing!!! Hint...

Wishing you all a joyful week!
Kate

Wednesday, May 7, 2008 9:12 PM CDT

Sorry..Sorry..Sorry... It has been a busy two weeks. First, there isn't too much to report regarding my health. I had a blood transfusion on Friday which was great timing as my family was in the Cities to help my Mom celebrate her 80th Birthday!! It was a wonderful weekend! As of today, my platletts are only at 14 - You can actually begin to bleed out for no reason if you drop below 10. At the same time, they don't transfuse unless the person is 10 or below. The reason they won't transfuse is that I could become immune to the transfusions and they would no longer work. So, we will retest Fri. and hope that my platletts have gone up.

The Well Within benefit went great. I can't thank those of you who supported us enough! So many donated items for the silent auction and we had 27 of our family and friends attend. The auction brought in a total of 200 people. We can continue to serve those who are in a health crisis. Thank you.

My Mom turned 80 last Friday. It is difficult to believe because 80 sounds old. My Mom is far from old. Her 80th BDay also marked my third anniversary of being diagnosed. You probably remember that the Mayo told me that I had approx. two years to live. Without a doubt, I know that I am still here because of the love and support that surrounds me. It is obvious that Grant & Brett keep me going and are the loves of my life but, my Mom has played an enormous role in my health as well. On May 1st, 2005, I was told that there was "something wrong." Maria called my Mom and my Mom and Neil arrived at our home on May 2nd, just as Brett & I were walking out the door to get another scan to determine exactly what that "something" was. Three years ago... She hasn't left for more than a couple of days since (she lives in Nisswa, MN). She hasn't missed a single test, a single chemo session, a single day that I needed my "Mommy". Happy 80th Mom. I am so grateful to have such an incredible role model in my life. I hope that I can be as good as Mom to Grant as you have been to me - to all of us.

I have been bugging Brett to give an update. We will see if I can get him away from CNN long enough... He is going to have to stop the 24/7 obsession with politics (go Obama!) because he is going to start working again. Brett will join his longtime friend, Troy Boschee at Valley West Chiropratic in Bloomington. Many of his patients have told me how much they miss him and he is excited to get back to them.

My heart breaks for the hundreds of thousands of people in Burma (Mayan Mar). I can't imagine such a tragedy. It is another reminder how blessed we are in our lives and that we should be grateful for the many gifts we are given each day.

Wishing you peace and great love,
Kate

Monday, April 21, 2008 7:47 PM CDT

**As expected, my blood counts are in the tank.
White Cells: 0.8 (norm = 3.5 - 10.8)
Hemoglobin/Red Cells: 8.6 (norm = 11.5 - 16)
Platlets: 29 (norm = 130 - 430)
Baby White Cells: 0.3 (norm = 1.9 - 8)

There isn't much we can do at this point. I am on a "Low White Cell" diet which means that I can't eat fresh vegetables or fruits unless they can be peeled. No nuts etc... Anything that may harbor germs or molds. If my hemoglobin drops below 8.5, I will get a transfussion on Friday. If my platlets drop below 20, I will get a platlet pack as well. I also have thrush in my throat and mouth. Lovely! Oh well, by next week I should be feeling great again.

We hope to postpone my next chemo and take a trip at the end of May. As of right now, I am scheduled for chemo in mid/late May and then a PET/CT scan right after. The scan may cause our Oncologist to suggest we postpone our trip - we'll have to see what he says but we are so ready to take a break as a family!

Grant is constantly playing "kitty". We had to euthanize (sp?) our cat, Bootsie II last week and Grant has been very sad (we all were). We bumped into someone from our church yesterday. Grant told him how Bootsie died and that she was up in heaven, emphatically pointing up to the sky. Grant then said in the cutest,most dramatic voice, "Last night, when no one was listening I said, Please God, please, please bring my Bootsie back to me." It was so sad but so dramatic that I had to look away for fear I would start laughing. I think he is still trying to process her death and is working it out by pretending to be Bootsie every day, all day.

If anyone is still interested in joining us at the benefit for Well Within, we'd love to see you! Thank you to all who have supported WW already!
Enjoy these beautiful days!
Kate

Chemo was a �go� last week. This round has been a little tougher on my stomach and throat. Chemo wreaks havoc on the lining of throat, mouth etc�I was finally starting to get my appetite back only to discover that I still can�t eat because swallowing is too painful! Waaa Waaa�

Some very cool news on my sister, Maria & clan� Maria just found out that she was selected for the St. Benedict�s Alumni of the Year Award. I had thought about nominating her for the award last summer and am so grateful to her friends who actually got it done! Conor won the �Mr. Boston College� competition. He poked fun at it, wearing a tight leotard and dancing with different colored flags for the talent competition! Conor will grad. in May and starts at Deloitte & Touche as a consultant in July. Timmer was hired at a local T.V station in Fairbanks Alaska. His girlfriend lives in Alaska so Timmer started calling around to all TV stations until he found someone who would hire him. Coley is still getting straight A�s at Minnehaha and enjoying a great baseball season. Pretty amazing week at the O�Phelan house.

We�ll update after my appt. on Wed. Have a great week and thanks to those of you who are joining us at the Well Within fundraiser! Oh yes � did anyone watch CNN�s Compassion Forum? What happened to the separation between Church & State????

Join Us�

Well Within
A nonprofit holistic wellness resource center
Well Within is a warm and welcoming nonprofit wellness resource center that offers innovative programs and services to those who seek well-being and healing of body, mind and spirit.

Spring Fling
Sunday April 27th, 2008
6:00 - 9:00 pm
Dinner & Silent Auction
Please call 651-451-3113 to register (please register by April 25th)
$75.00 per person
$35.00 of each ticket is tax deductible

Thank you to those of you who made a donation for the auction! Steph Munyon, Northland Business, Scott Arnseth, Teresa Hermes Photography, Hunt Utilities Group, Firefly Cafe, Hot Plate Diner, Shop in the City, Melissa Mckeand, John Lundrigan, CBIZ Payroll...

There will be many great items for you to bid. For example:
* One year membership at the Pool and Yacht Club in Lilydale
* Wine tasting for a party of 10
* Vacation get aways
* Tickets to the Guthrie Theater
* Sports memorabilia and sporting event tickets � Signed basketball - 2008 Timberwolves & signed photo, including KG!
* Gift certificates to spas, restaurants, boutique shopping stores and more!!!

Wednesday, April 9, 2008 9:23 PM CDT

UPDATE: Thurs nite, April 17
Kate had chemo yesterday and today. She is pretty nauseous this time around by hanging in there. More info to follow once we get a handle on which response to chemo we'll get this time.
Maria

As expected, no chemo today! I came close but my platelets were still too low. Brett & I are the godparents to Sander Ohe and his baptism is this Sunday, so I am VERY happy that chemo is postponed to next week.

Brett & Grant survived their bouts with the flu. Barely. Brett was literally in bed for six days! There is no way to keep a four year old boy in bed for that long but he was definitely sick enough. Grant's first day back to school was today. My super woman immune system kept me healthy despite the many boogers I wiped (on Grant that is!).

As some of you know, I am both a client of Well Within as well as a volunteer. On April 27th, Well Within will be having their annual fundraising dinner and silent auction at the Southview Country Club. They are truly an impressive organization. Brett & I would love to fill the room with family and friends! There are some great items on which to bid and plenty of wine for all... We would love to see you there!!!

Well Within
A nonprofit holistic wellness resource center
Well Within is a warm and welcoming nonprofit wellness resource center that offers innovative programs and services to those who seek well-being and healing of body, mind and spirit.

Spring Fling
Sunday April 27th, 2008
6:00 - 9:00 pm
Dinner & Silent Auction
Please call 651-451-3113 to register (please register by April 25th)
$75.00 per person
$35.00 of each ticket is tax deductible

Thank you to those of you who made a donation for the auction! Steph Munyon, Northland Business, Scott Arnseth, Teresa Hermes Photography, Hunt Utilities Group, Firefly Cafe, For Evans Sake, Donna Allen, NR Hunt Studios, Hot Plate Diner, Shop in the City, Melissa Mckeand, John Lundrigan, CBIZ Payroll, Kate Bendell & Channel 5 News... Many many more companies and individuals have donated items such as:

* One year membership at the Pool and Yacht Club in Lilydale
* Wine tasting for a party of 10
* Vacation get aways
* Tickets to the Guthrie Theater
* Sports memorabilia and sporting event tickets
* Gift certificates to spas, restaurants, boutique shopping stores and more!!!

Wednesday, April 2, 2008 12:45 AM CDT

Thanks for all of the notes of encouragement! They mean a lot to our family! Out meeting with the Oncologist, Dr. S, went well. It was fairly quick due to my low blood counts. My hemoglobin was 7.7, platletts 22 and white blood cells 1.6 (neutrophil were 1.0). Since the counts were all low, I needed to go to Abbott Hosp. to get 2 liters of red blood cells and 1 platlett pack (it literally takes all day). We didn't get a lot of time to discuss future plans but we are set up to do two more rounds of chemo and a scan at the end of May. I am scheduled for chemo next week but I doubt it will happen with such low counts.

Thank you Sandy for taking care of Grant yesterday! Brett has a bad cold and slept all day at the hospital. Unfortunately, Grant was up all night with the same flu. THus, the two are stuck in bed today watching the Power Rangers. In all of the years Brett & I have been together, I can think of only one time that he has been sick - he is making up for lost time this year! I think he has had the flu at least four or five times. Par for the course, I continue to beat the odds and have stayed healthy despite having a comprimised immune system. I seem to do the unexpected on our journey - I have stayed healthy, I have kept my hair when most go bald, I have gained 15 lbs. from chemo when most lose that amount of weight, most importantly, I have had a terrific response to the chemo despite the fact that the experts told us that it would have little effect!

Another Grant quip - Grant woke up at 6:15 am yesterday and yelled out for us to get him. Brett told him he needed to stay in bed for another 15 minutes. Grant started singing at the top of his lungs and asked every 30 seconds if the 15 mins had passed . At the 5 min mark, he asked again. Brett told him he had 5mins left and Grant yelled back, "Yep. Ok then. Five minutes it is."

Sandy took Grant to see her Mother at the nursing home yesterday. Grant had never met Sandy's Mom but quickly warmed up to her, asking if he could sit next to her during lunch. After lunch, he hopped out of his chair, went over and hugged her and said, "I just love you Grandma Betty." Sandy said that he was quite a little flirt with the other little old ladies as well!

Hopefully it will be an uneventfull week and we won't have anything to post until next Wed. Have a great week!

Congrats to the Gleason Camp!! Baby number three was born on their kitchen floor last Friday! They hadn't named baby girl as of last week but Cy was calling her "Tiger Lily."

Kate

Monday, March 31, 2008 4:37 PM CDT

Your prayers and well wishes continue to work miracles! We don't have a lot of detail as of yet, but what we do know is that the results of the PET/CT are good! My nurse said that "everything has improved". Specifically, T8 is totally resolved and that the lesion in my lung has "massively improved" (although, we thought that the last scan had said that all spine and lung lesions were gone?). There is still extensive disease throughout the retoperitoneal and pelvic regions but that all tumors have improved and shrunk!!!! Hooray!!

So we are in the "now what" stage. We will see my oncologist tomorrow a.m. to determine our next step. My nurse thought that despite what the CA doc told us, my body needs to take a break from chemo. We will update the site after our meeting. As of today, I am scheduled to do my next chemo round on April 9th, 10th & 11th.

Thank you for keeping our family in your hearts and prayers. Sent with much joy & love,

Kate

Wednesday, March 26, 2008 11:32 AM CDT

****Yes, the main character is my nephew, Timmer. He and his friends wrote all of the music (Timmer may have written it solo, but I'm not sure). Thanks for voting! As of today (Fri), he is in 13th place.****

Another Grant story - We went to Jax for Easter brunch. The Easter Bunny was walking around, greeting all of the kids. Grant asked, "Is that the real Easter Bunny or just a helper?" I said, "Just a helper. Why do you ask?" Grant replied, "Because he hasn't blinked his eyes yet." Pretty observant kid.

***Please let me know what you thought of the video!***

My nephew wrote/acted in a You Tube video called, Two Beers and a Mustache. He submitted it in a contest for Schick Razors. It is HILLARIOUS!! He has made it to the finals and needs your help to win $25,000!!! Please go to

www.youtube.com/Schick

Click on the "thumbs up" symbol. You may vote once every day.

Either look for "Two Beers and a Mustache" or go to "search for a video" and type in "Tophelan" (Timmer O'phelan is his name)!! The video is great!!! Thank you! We will keep you posted if he wins!!

Counts are low again - probable transfusion on Friday. We had a great Easter. The Easter Bunny hid eggs & a basket for Grant. After Grant found his last egg he said, "Mommy, I must be a special boy to get all of these nice things." Oh he is so sweet!

Hope you are feeling special yourself today!
Kate

VOTE!!!!!

Wednesday, March 19, 2008 10:04 PM CDT

*** Brett & I were discussing the Obama / Wright incident the other night. Grant thought Brett was taking a mean tone with me and told him to stop talking to his Mom that way! I explained to Grant that we were just discussing politics and Grant, without our have mentioning her name said, "Are you talking about Hillary Clinton?" I then asked him who he would like to be our next president and Grant stated, "Hillary Clinton because she is a girl and I like girls best." It's as good of arguement as any...

We had several family memebers to dinner last night (thanks to Heather & Nate for making it!), including my niece, Katie Jeanne. Grant asked her to sit next to him because "Katie is beautiful and I just want to stare at her." Man are we in going to be in trouble.

Have a wonderful Easter.

K
***

A possible change in plans... As we have told you, I am scheduled for a PET/CT scan on March 31st. Provided that the results are positive, I will have two more chemo. sessions and then will take a needed six mth break. If the scan doesn't look so hot, I will take a six month break immediately. Brett & I have been making some travel plans for the break and have been looking forward to getting away (D.C., Boston & somewhere warm). Unfortunately, Dr. Fitzgerald called the other day and strongly urged us to continue with the chemo regime. His research has shown, as soon as we stop the chemo, the cancer will continue to grow at an aggressive rate. My oncologist is on vacation this week so we will discuss when he returns.

Grant & I played his favorite game, Grey Duck, last night. It was the epitome of parenting through cancer - I was connected to an I.V. (for fluids), pole and all while running in a circle, attempting to play Grey Duck with two people! Grant is great!Grant started at his new preschool - the Garfield House at Mt. Olivet. He is thrilled to be back in the same class as his girlfriends, Emma & Addie. We were scheduled for a tour but my counts are in the tank at the moment. In fact, I have virtually no white cells to fight an infection so we are back to bathing in Purell.

Brett & I have ejoyed watching the politcal pundits while I have been laid out. BOth Michelle & Barack Obama are incredible orators and genuinely inspirational. I was originally a Hillary fan but Brett is starting to show me the Obama way!

Happy Spring Equinox & have a blessed Easter!

Kate

Thursday, March 13, 2008 3:59 PM CDT

Update: Monday, March 17th:
Happy St. Patrick's Day! Kate won this round with chemo. She rebounded fairly quickly from the nausea. The key seems to be spending the first 3 days expending VERY little energy and getting several rounds of IV fluids before the chemo. She'll still face numbers dropping over the next few weeks but the "icky" part seems to have passed.

Thursday:
Kate began her 6th round of chemo on Wednesday. She continued it today and has a "touch-up" session on Friday (which is miscellaneous shots and fluids, but not chemo.)
She was green after the first round, but felt a little better by bedtime.

Chemo is cumulative, so we know each round can hit her a little harder than the last one. Now until this time next week are the toughest times, so keep her in your thoughts.

Cute Grant Story #101:
Maria: Look, Grant, Bootsie is sitting on the radiator to keep warm.
Grant: I don't need a radiator. My body makes its own heat to keep me warm!
Maria: That's true. Your body will work hard to keep you warm.
Grant: My Dad doesn't understand that. He keeps telling me I have to wear a SHIRT to keep me warm!

Silly Dad.

Keep those thoughts and positive energies coming!
Maria

Saturday, March 8, 2008 8:02 AM CST

Chemo was postponed for yet another week. Her platelets were at 42 and they need to be at 50. The last chemo dropped them to 18 so the docs didn't dare take a chance on the 42 count.

The good news is that meant they could celebrate Brett's birthday on Friday. Th Hunt Mortenson household does keep us busy with 3 birthdays in less than a month! It's a festive household during this time of year. Happy Birthday, Brett (a day late!)

Grant continues to keep the house lively. He told Kate that he wished Kate had given birth to Timmer (his cousin, who also had a birthday Friday - Happy 20th, Timmer) first, then had Grant so that Timmer would be his older brother. "Why didn't you do that?" "Because Timmer is Maria's baby." "How do you know that for sure?" "He grew in Maria's tummy." "Oh,then can we just go live with him forever?" Love of cousins lives strong!

Keep pulling for a higher platelet count. She wants to keep blasting the "c" for as long as possible.

Love,
Maria

Friday, February 29, 2008 6:02 PM CST

No chemo this week - postponed to next week due to low blood counts. I had another blood transfusion today so should have an energetic weekend!

Wishing you a warm and energetic weekend yourself!

K

Tuesday, February 26, 2008 11:40 AM CST

FINALLY - some new pictures! We haven't taken the pictures off my camera in months and sorting through 250 pictures is not easy!

Chemo. is scheduled for tomorrow. It is unlikely that I will actually receive it due to my blood counts. Platelets were at 18k last week and my White cells were so low that Brett had to give me shots of Nepogen (sp?) all weekend. We'll let you know.

This may be my last round of chemo. I will have a PET/CT at the end of March. WHEN the results show that the tumors have shrunk even more, I will receive two more rounds of chemo. If the results show that the tumors are stable or have grown a bit, I will take a six month hiatus. It sounds contradictory, but it is the way they do it. Apparently, my body could begin to reject the chemo. so we need to take a break. Also, my bone marrow is not loving chemo and struggles to rebound. A six month break might be nice however.

Grant wrote "Grandma Namma Namma" and his name yesterday. Up until then, he could write a few letters, but not all. All of a sudden, he can write all letters of the alphabet! Of course Brett & I think he is a genius. The other day, Grant took a ten dollar bill off of the table. I told him that he had to give it to me and he refused telling me, "But Mom, I am a collector of money! I have to keep it."

Grant received a "real" doctors kit from his Grandma Bop (She works as a buyer at a hospital in N.D.). He LOVES to play doctor! Maria was shocked by Grant's medical knowledge the other day. He told her to sit down because she needed a blood transfusion and that he would cure her cancer for her.
I asked him if he thinks about Mom's cancer often and he said, "Yes".
Kate - "What do you think about my having cancer?"
Grant - "Bad."
Kate - "I am working very hard to get better and you don't need to worry about it right now. OK?"
Grant - "Ok, but I worry about something coming out of the ground and hurting you and I get afraid."

Cancer sucks.

The good news is that I have been able to play like any healthy Mom these past months. It is great. Other than feeling tired and having to go to countless appointments, our life feels normal. For that, I am extremely grateful.

Love to you all,
Kate

Friday, February 22, 2008 11:31 AM CST

Greetings! We have been terrible about updating the site lately - sorry! After five rounds of chemo, I am feeling a bit tired. I spent the ENTIRE day in bed on Sunday (I can't stand lying around!) and most of the day yesterday. I had a blood transfusion on Monday and will leave for a platlett transfusion in an hour or so. I get a little grossed out thinking about a strangers blood pulsing through my veins but I definately feel better after the transfusions.

We had a fantastic time celebrating the little man's birthday. We are blessed to have so many people who love him! Grant has become quite the singer since turning four. Besides the latest Springsteen disk, Grant also walks around singing The Killer's "You had a boyfriend who looked like the girlfriend that I had in Febuary of last year...". I prefer that he stick to the Boss or Van Morrison but apparently, those songs aren't as "cool."

Thanks for sticking with us and continuing to post notes, cards etc... As I am feeling better, I am also feeling a little cooped up and bored at times (when Grant is at school). Wow, a few months ago I wouldn't have believed that I would feel well enough to be bored! So, keep the notes coming!

I hope that you are all well. Spring is just around the corner and the sun should show itself again soon!

Love to you,
Kate

Monday, February 11, 2008 11:14 AM CST

Wow! Do we ever need a new picture. Well, Grant's birthday was this weekend, so we have a few 100 to choose from. I'm sure they will be posted soon.

Kate had a rougher time bouncing back from the chemo this week. Her docs say that it is the cumulative effect of chemos past that are haunting her. She has been very wiped out and we expect her blood is not looking so hot. She is scheduled for a check on Wednesday, but will try to get it changed to today if she can.

Despite that, the birthday party (or shall I say weekend) was a huge success. Almost 30 family members showed up for the actual birthday on Saturday, and then at the water park on Sunday. A good time was had by all, though we were all ready to join Kate on the couch by the end.

Grant loves being four. I'm sure Kate or Brett will update soon on their reflections on the big event. Oh, and a warning to all...his favorite gift was a whoopie cushion so sit gingerly when at the Mortenson household!

Love,
Maria
2/5/08
Greetings! Although it has been a long time since I have posted an update on our site, I read it daily and continue to be lifted by your notes of encouragement. I think we have nearly 350,000 hits � you people are crazy but I certainly appreciate the well wishes and prayers! Wow, we have come a long way since August! I worked to remain positive but still could not get rid of the feeling that I would not live to see Grant celebrate his fourth birthday. Now here we are and I am feeling better than I have in a year (With the exception of the chemo blahs. Maria spoke too soon because this round kicked me in the butt again!)!

There have been many funny Grant stories the past couple of days. This morning, Brett was commending Grant for all of the �big boy� behaviors we have witnessed this week. Grant replied, �Yeah, I�m feeling really good about myself.� Later, while listening to the Boss, Grant told Brett that he liked a particular song because it reminded him of Mom and he liked having those thoughts in his brain.

Karin just showed up with a Chai latte so I had better get going before it gets cold! Love to all of you!

Kate

Friday, February 1, 2008 3:43 PM CST

After postponing chemo last week due to blood counts and then not being able to do it again on Wednesday (for the same reason), Kate was ticked. As you all know by now, that means things need to shape up. Kate went back the very next day (after having a shot to try and improve the counts) and her blood, not wanting to incur the wrath any longer, cooperated. She had chemo on Thursday. She's reacting like the last round, sleepy and somewhat nauseous, but not too bad. Easy for me to say :)
The game plan is to have one more round of chemo in 3-4 weeks, then take up to 6 months off. I like the sound of that!

Grant and I are going on a date tonight, so I'm sure I'll have a "Grant Story" for you shortly. His birthday is next weekend and a large showing is expected. Sarah, Kurt and Max are even coming in from Seattle! Should be fun.

Love to all. Stay warm.
Maria

Monday, January 21, 2008 9:23 PM CST

After the seemingly 100th scan of this journey, you would think that this would be becoming a little less nerve-wracking. But, as we learned over the weekend during a chance meeting with another family going through the same battle; no scan is routine and life is lived from scan to scan. Today was weighing on our family even more due to the fact that the very decision to go down the road of chemotherapy without overwhelming odds in its favor was difficult and brought about begrudgingly by the fact that this horrible disease was running rampant through Kate and we were frankly losing the battle. When Kate got the call from her beloved nurse today, they both broke down into tears. Not because of bad news for a change- the rad report came back showing a significant response to treatment including an almost complete resolution of the tumors that had been invading her spine. There is still a certain degree of shock involved. The most extensive tumor burden in her abdomen also had shown a decrease in size and metabolic activity. We will have a greater appreciation of what this all means later this week.
Brett

Monday, January 7, 2008 11:27 AM CST

Sorry we are going to long inbetween updates, but frankly, there isn't much to report! Kate continues to feel well. She has rebounded quickly from the last round of chemo (although this is the week her numbers start doing goofy things so I don't want to speak too quickly).
She will have a scan on the 21st to see if things are shrinking. If all is well with that, she'll have chemo again the next day.
Her hair has thinned out, but is still there in all it's glory as you can see from the pictures.
Thanks to everyone for their positive energies and assistance. It is working!

Love,
Maria

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