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Friday, December 28, 2007 9:56 AM CST Happy New Year to all!
Kate continued to feel well throughout Christmas. Brett, on the other hand, got the flu Christmas Day. I think he was just looking for a way to spend 16 hours in bed, but whatever...
Kate is on day 2 of chemo and so far, so good. She tolerated Day 1 very well and even stopped at Patina's for the 1/2 off Christmas decorations afterwards. The Mortenson's are in town for their Christmas celebrations and to help out.
Grant has a delight at Christmas. Santa stopped by my house on Christmas Eve to do a final check on the chimney, and Grant just loved it. He was very chummy with Santa and thoroughly went through the details of which cookies and milk he should leave.
On Christmas morning, he was most thrilled with the 2 oranges in his stocking!!!
All is well. My wish for you in 2008 is that you can say the same.
Maria
Thursday, December 20, 2007 10:34 AM CST Holiday greetings to all.
Christmas has come early for our clan this year. Kate has been feeling great these last few weeks and we have been running our tails off taking in as many holiday events as we can (We apparently were running a little too hard as Kate is currently getting another transfusion as I write this from our favorite hangout- the hotel Abbott). The family waiting room (with computer access) is located in the Oncology ward. Whenever I stroll through these halls it seems hard to believe how bad things really were during our last stay here. Each time I see one of the many nurses who have also fallen prey to Kate's magic, they immediately whince at the thought that she might be "back in" and are relieved hear that she is just getting blood that day. They are such amazing people who do a job that very few could and do it with such sincere caring. Everyone that sees her here are amazed at how far she has come and how great she looks- the last time they saw her we were wheeling her out with multiple tubes hanging out of her and hooked up to an oxygen tank. So that brings us back to gifts received. My gift this year was this season and watching Kate carry Grant on her back down the hallway with Grant saying "Mommy I think you are getting stronger!" Peace to you, Brett
Tuesday, December 11, 2007 8:13 AM CST Whew. Chemo and Christmas don't mix well when it comes to time management.... sorry about the lack of updates! Kate has bounced back much more quickly this time. Her blood counts are already back to their higher levels and they are discussing the next chemo round already. I'm hoping it is the day AFTER Christmas so she can enjoy the little guy as he tries to catch Santa in the act. When asked about his Santa wish list, Grant added a new one to his previous wish...a shiny new red race car will a white stripe. When Kate asked him what it was called, he said, "It's called 'Batteries Not Included'. Obviously, he learned of the car from a commercial!
Kate's bored, which is always a good sign that she is feeling better. She even made a quick trip to Patina with me one day.
Her hair is thinning, but she definitely still has it at this point. Kathy, her nurse, is amazed!
Hope everyone is enjoying the Christmas anticipation!
Love, Maria
Monday, December 3, 2007 1:02 PM CST Kate continued to improve throughout the weekend. She never did throw up but certainly felt like it quite a bit. Yesterday she started feeling like she "didn't have any blood". I interpreted that to mean she felt extremely weak. She was a little dizzy but overall ok if she stayed down in bed or on the couch.
Brett and Grant headed for the hills and went sledding on Sunday. It was a big weekend for Grant. Neil and Tori were down with his favorite "up North" cousins, then his big boy cousin, Timmer, showed up dressed like a blue super hero. Grant immediately slipped into his red Power Ranger suit and the two of them "saved the day" for hours. His favorite color might be pink, but he was all boy on Saturday!
The Christmas tree is up and it adds a wonderful smell and feeling to the room. Grant received his "very own" ornament, which he is proud of, then made several more so the tree is well decorated.
Kate gets blood work done today...we'll keep you informed.
Love, Maria
Tuesday, November 27, 2007 11:05 AM CST Thursday update: Still going well. Kate is sleeping from the anti-nausea pills, which I think is a brilliant strategy. Wake up when it's over!
Wednesday update: It is going relatively well. Kate is nauseous but hasn't hugged the toilet yet! Keep your fingers crossed!
Chemo is happening! She started today after a great comeback from the poor counts and bad weekend cold. Seems strange to be excited about chemo, but it means the fight goes on.
Our expectation is that she won't feel well from tomorrow through the weekend. Then she'll be ok again until the numbers start dropping (around day 10). Kathy, her home health nurse) will take good care of her throughout that time.
It helps to have been through it once before so we know what to do a little bit more.
My brother, Joe, recently did a "Kate Map" and found that her caringbridge entries have come from. After nearly 300,000 hits to her site we have: 3,679 messages 647 e-mail addresses 232 cities 37 states 11 countries 6 continents
Now that is pull! Keep those prayers coming...they are working.
Maria
Sunday, November 25, 2007 8:06 AM CST Chemo update: Once again, there was no chemo. This time it was her white blood ceels count, which was 1.2 That puts her in the "danger" zone for infection. We were told that on Friday and Saturday morning, Kate wakes up with a terrible cold. I think it's the first big cold she's had in the past 2.5 years. Luckily, Kathy, her home health nurse, was scheduled to come yesterday morning. She had her do IV liquids (to keep her very hydrated) and some antibiotics as a precautionary thing. Now we wait it out. Her port allows them to do these things fairly easily at home. Otherwise, she'd be back in the hospital.
They have given her some injections to try and bring all her counts up by Tuesday so she can try chemo again. I'm not sure how the cold will play into that, but, as with all the other treatments, we'll find out when she gets there.
Pray for a quick recovery and high counts!
Maria
Thursday, November 22, 2007 11:52 AM CST Happy Thanksgiving to each of you! Brett, Grant & I have much to be thankful for this year. I can't say that Health made our list for which we are grateful, but so many other things did. The first thing on my list is my husband and son. I can't imagine a life without them. The same is true for our families. We are also blessed to know each of you. We are so grateful for the many notes of encouragement and love. We are grateful for the many acts of care and love such as the meals, errand running, lawn care etc... Our journey would be MUCH more difficult if it were not for all of you. Words don't suffice but will have to do - THANK YOU.
We hope that you have a wonderful celebration of gratitude today. Much love to you, K.
Thursday, November 15, 2007 2:13 PM CST Kate's platelets are refusing to comply with the new treatment plan. We were scheduled to do chemo today, a makeup treatment from last weeks cancellation. We had everything in line for the weekend and beyond for additional help around the house, we prep'd Grant on the fact that mommy was going to have treatment again and that she may be sick for a while and that this time she would probably lose her hair (he laughed and laughed at the thought- hopefully he will keep that sense of humor if it actually happens), and Kate was eager to hammer this disease again. Kate has been feeling more energetic lately and looks as beautiful as ever. So not having to go through another brutal stretch again should have been somewhat good news. Kate, however, was dissapointed. It was only three weeks ago that she was wondering if she would be able to live with the side effects of chemo. But having come out the other side the last couple of weeks and feeling better than before making the decision to go this route, she wanted to hit it again. I am awed by her strength. Several people have brought up Kate's walk when they offer kind words about their first time meeting her. It first hit me during one of our first dates. She came gliding back to the table from across the room. I don't know what it is about it, the self assuredness, the class that I have always thought it exuded, the fact that she is a freakin bombshell; I don't know for sure what it is but when it first hit me I knew I was done for. That walk may be a little slower these days, and she may have accesorized it with a portable morphine pump, but she is still working it these days and I am still done for. Thanks to all of you for the encouraging words, Brett
Tuesday, November 13, 2007 7:44 AM CST **** Grant has outgrown his car seats. If anyone is interested, we have 2 Evenflo ComfortSeat car seats - both are dark grey. One was rarely used. They are free so email at brmortenson@yahoo. *****
Kate has enjoyed energy and relatively good health all week. She and Brett actually went on a date (thanks for keeping Grant, Karin!) and it was even out of the house!!!
The chemo sessions are scheduled for Thursday and Friday, so the next week might not be as fun. MOHPA thinks they can control her side effects better now than last time because they know what to expect. Hopefully, they are correct. Kate's hair is starting to come out so we are picking up her wig today. Watch for new photos..will she be a blond? Redhead? Maybe she join me in the world of grey hairs???
About 20 people have written letters to Grant so far. They are beautiful. A friend of mine from St. Ben's is scrapbooking them into the most amazing book (Thanks, Jane!) It is not too late to get yours in if you are so inclined. Kate loves reading them and knowing that Grant will know so many things about her and her friends. Here is the journal entry from June about the letters. " I've been secretly asking people to write letters to Grant, telling him how they met his mom, why they became friends, why they have stayed friends and a story about their adventures with her. It was going to be a secret book for Kate. The cat is out of the bag, so I'm now going public with the message. Kate has loved the letters that have come in so far and is looking forward to more. Please consider writing a letter. We will make a wonderful book for Kate, Brett and Grant to read together. The letters can be emailed to me at maria.ophelan@securian.com or ophelan@comcast.net. If you prefer a handwritten letter, please mail it to me at: Maria O'Phelan 1665 Summit Avenue Saint Paul, MN 55105 "
Keep you fingers crossed for an easy chemo week. Love, Maria
Tuesday, November 6, 2007 10:37 AM CST Wednesday's update: The chemo is off again or, rather, postponed until next week. Kate's blood counts were not in a safe zone to receive chemo. Instead they will work on getting it "in the zone" for next week.
Update: The chemo is on! Kate's PET scan indicates reduction. We don't have all the facts now but the news is positive. On the other hand, her platelets have dropped into the danger zone, so she is headed to Abbott this morning for a platelet transfusion.
Monday, November 5, 2007 7:25 AM CST
Kate had a good weekend. (Can't say the same about Brett...ask him about cat puke and backed up sewage systems if you want to learn some new words not to say in public.) Kate's transfusion seemed to work well as most of her blood count numbers jumped back up. Yesterday, she had to stay very low because today is her PET scan. It picks up metabolic activity, so she had to stay very quiet yesterday to keep the activity from normal movements down.
Today is the PET scan and we are all a little nervous. If it shows any growth, they may call off the chemo. Even though chemo isn't a delightful experience, it is a form of fighting. If they call it off, they have no further suggestions for ways to fight the "c" other than sure stubbornness. You wouldn't be reading this site if you didn't know Kate, so stubbornness might actually work and is probably what has brought her this far, but we'd just as soon have a few other options.
Cute Grant story today: Grant was visiting with his babysitter and started talking nonsense. When Laura asked him what language he was speaking, he said, "It's called cleverness when you speak French!" Oo-la-la!
Keep you toes and fingers crossed today for shrinkage, or at least stability!
Love, Maria
Wednesday, October 31, 2007 8:06 AM CDT Sorry for the lack of updates, but guess why!!! Because Kate isn't doing anything unusual. She is up most of the day, alert, bright eyed, playing cards with Mom and Grant and not nauseated. Not that she isn't dealing with all the cancer issues, but she is definitely back to the early September level. I'm not sure if any of you are familiar with the old childhood poem "There was an old lady who swalled a fly", but Kate's cancer routine reminds me of it. Here is an excerpt from the poem:
There was an old lady who swallowed a dog. What a hog! To swallow a dog! She swallowed the dog to catch the cat... She swallowed the cat to catch the bird ... She swallowed the bird to catch the spider That wriggled and jiggled and wiggled inside her. She swallowed the spider to catch the fly. But I dunno why she swallowed that fly
Well, in Kate's case, she swallowed the pill to catch the cancer, then swallowed the next pill to counteract the first one, then had a potassium IV to conteract the second pill, etc. etc. It's Brett's full-time job now to keep up with everything and know which pill is doing what!
Kate's nausea has really slowed down. Her counts are way down so they'll probably due a transfusion on Thursday. She has a scan early next week, then her second round of chemo on Wed and Thurs.
Grant had his cast removed yesterday and says he'll really miss it! He was pretty excited to have 2 working hands yesterday. Today, his school as a costume parade for the Adult DayCare section of his school. That and trick-or-treating will make for a very exciting day.
Keep those prayers coming. You guys have amazing pull!
Love, Maria
Wednesday, October 31, 2007 8:06 AM CDT Sorry for the lack of updates, but guess why!!! Because Kate isn't doing anything unusual. She is up most of the day, alert, bright eyed, playing cards with Mom and Grant and not nauseated. Not that she isn't dealing with all the cancer issues, but she is definitely back to the early September level. I'm not sure if any of you are familiar with the old childhood poem "There was an old lady who swalled a fly", but Kate's cancer routine reminds me of it. Here is an excerpt from the poem:
There was an old lady who swallowed a dog. What a hog! To swallow a dog! She swallowed the dog to catch the cat... She swallowed the cat to catch the bird ... She swallowed the bird to catch the spider That wriggled and jiggled and wiggled inside her. She swallowed the spider to catch the fly. But I dunno why she swallowed that fly
Well, in Kate's case, she swallowed the pill to catch the cancer, then swallowed the next pill to counteract the first one, then had a potassium IV to conteract the second pill, etc. etc. It's Brett's full-time job now to keep up with everything and know which pill is doing what!
Kate's nausea has really slowed down. Her counts are way down so they'll probably do a transfusion on Thursday. She has a scan early next week, then her second round of chemo on Wed and Thurs.
Grant had his cast removed yesterday and says he'll really miss it! He was pretty excited to have 2 working hands yesterday. Today, his school has a costume parade for the Adult DayCare section of his school. That and trick-or-treating will make for a very exciting day.
Keep those prayers coming. You guys have amazing pull!
Love, Maria
Friday, October 26, 2007 9:38 AM CDT Yesterday was a very different day. Kate was awake most of the day, eating in small amounts and KEEPING IT DOWN!, chatting, and smiling. We have turned a corner away from the chemo blues and, hopefully, will enjoy this for a couple of weeks now before it starts again.
Grant and Brett had a "date night" at the MOA. Grant picked up his Power Ranger costume (which real lights on the head piece) and ate next to the fish at the Rainbow Cafe. A good time was had by all.
Kate's numbers were pretty good, except for her potassium which they will address today through some means. Keep the prayers coming. Things are definitely getting more comfortable for her.
Love, Maria
Monday, October 22, 2007 9:10 AM CDT Long weekend... Kate's nausea kicked in on Saturday so it was a rough weekend. Sunday was better, but she was still pretty wiped out. She is getting fluids via an IV so she doesn't really have to take anything by mouth right now. Today is reported to be better...back to the hiccup urps. Funny how what was an issue on Friday (the urps) so a welcome improvement on Monday! It is all relative.
Visitors: Mostly, she is not letting anyone in the room right now. Maybe by the weekend??? Also, her immunity system will be very compromised so if you're showing any symptoms of anything, a card would be welcome. If you've had the flu shot, you need to wait 48 hours before seeing her. I need to read the rest of the chemo materials this week, so I'll fill you in on whatever else I learn that could impact visits.
Maria
Friday, October 19, 2007 11:26 AM CDT We're into day 2 of the chemo and so far so good. Yesterday was a very long day as Kate was deemed too dehydrated to start the chemo so first they gave her IV fluids. Then the chemo. Bottom line was they showed up for their appointment at 9 and didn't get home until after 5pm. Needless to say, she was tired. She did eat some dinner though and made it through the night without actually throwing up. Brett had one funny "crazy talk" story to share: During the night, she would hiccup and get a little burning sensation in her mouth. She said she had the hiccup urps and stated "I thought after all that college, that this wouldn't happen to me. But now, here I am, dealing with the hiccup urps. It must be lifestyle related." Ok, here is a message to her college friends. What were you doing that causes her to think that urping is college related and lifestyle related? Hmmmm. A few memories to share perhaps? She will have another long day today, then 21 days off. Hopefully, urping will be the extent of the side effects. As Mary O'Keefe noted in the guestbook, pray for no side effects since it never hurts to ask!!
Love, Maria
Tuesday, October 16, 2007 8:23 AM CDT Just a quick update.. Kate's pain is still under control. The morphine port provides her "hits" on a small basis through out the day, so the pain doesn't get a head of her. Fatique is still present much of the time, but she loves being home and being able to eat at the kitchen table with Grant, play Candy Land or watch him decorate for Halloween. Sarah, Kurt and Max were here all weekend (they are leaving today). The "boys" all went down to Elko Speedway with the neighbor "boys" and watched Monster Trucks. Major male bonding occurred. Grant loved having his 6 year old cousin living at his house. He played hard, went to bed late and missed naps. Life doesn't get any better than that. Chemo is still scheduled for Thursday, so all fingers crossed hoping for controlled side effects!!
Love, Maria
Friday, October 12, 2007 11:35 AM CDT Well, Grant has adjusted well to life with a hot pink cast. (We'll work on getting a picture onto the web.) He is quick to run up to visitors with his marker to be sure they sign his cast. Today, he returned to school where I'm sure he is enjoying the attention as well. His favorite phrase these days is "Sit be next to me!" It's a personal favorite of Kate and Brett and melts their hearts every time.
Kate maybe got a little worn out from all the hubbub. She was pretty tired yesterday so was trying to have a laid back day. Her pain remains under control, although she had a bit more yesterday. It was also time for the morphine drip to be changed so maybe she wasn't getting the right amount either. Her blood work is back to normal. Grant has been a great helper. He is very gentle whenever he is on the bed and seems to get that bouncing has to happen in another room.
At this time, they are scheduled to try chemo again next week.
Keep those thoughts and prayers coming!
Maria
Tuesday, October 9, 2007 7:57 PM CDT Keep those prayers and positive thoughts coming! Her pain is still under control and her breathing has improved so the oxygen is now optional. She has joined Brett and Grant at the park once too. What a difference two weeks makes.
Today's Grant story, on the other hand, kept the household busy. Brett and Grant went to the Hyland Park reserve play area and had it pretty much to themselves. Grant zigged where he should have zagged and landed on his wrist. After watching him for a few hours, Brett and Kate decided he'd best get a picture of it. Sure enough, it was broken. He's in a splint tonight and getting a cast tomorrow. Brett passed his true test of fatherhood. When Grant was asked what color cast he wanted, he said "pink" and Brett said "sure". What a man!
We're all ready for a good night's sleep tonight!
Maria
Sunday, October 7, 2007 1:42 PM CDT Sunday: Kate's pain is much more under control. She is more alert, enjoying family interaction for quite a while now between naps. Her nausea is off and on. As predicted, I can no longer use the "c" word now either, but that's ok because now she only has the IV/port and oxygen at night. (When I told her she had forbidden the "b" word, but not the "c" word, she said she had a couple of "b" words for me, too!)
Joe is in town from Seattle, so she is enjoying his visit. Grant was very happy to get back from his vacation to Espin's. He has been very happy and playing well all weekend.
Kate's home health nurse has been great and it helps the transition a lot to have her visits. After today, she won't be coming every day any more, but at least weekly.
Keep the prayers coming. She is definite more comfortable this week than last.
Love, Maria
Friday, October 5, 2007 8:09 AM CDT And her red heels clicked together and she was back in Kansas (or some midwestern state)...Home!
Kate made it home yesterday. She's a bit more bionic, with a port for her IV pain meds, a catheter and oxygen, but was happy to sink in her own bed. They drugged her up pretty well for the ride home so she wasn't talking much yesterday and I haven't had a report yet this morning, but she seemed comfortable.
We will have a home health nurse coming in regularly to make sure her "equipment" is all working well and to give us advice (like where do you hang a catheter bag when your bed doesn't have rails??) By the way, she'll be mad that I'm talking about the catheter, so mum's the word.
Grant will be home either tonight or tomorrow. We're working on all kinds of transition things like, how do we protect her port when a 3 year old wants a big hug and is kind of bouncy? How do we make the room inviting to him, while making sure he isn't tripping on the oxygen piping? It's amazing how creative you can get with kitchen pots, rugs, and other household items when you need to be!
I'll keep updating...
Maria
Friday, September 28, 2007 1:22 PM CDT Thursday update: She's going home this afternoon. I'll update again later on how the transition went!
Wednesday update: OK, maybe one more day at Hotel Abbott. The decision was made today to play with her meds one more day before releasing her. She was definitely more alert yesterday than she has been all week. Still very tired and needing regular "bumps" of pain meds, but coherent. The goal is to keep her pain tolerable without completely knocking her out. It's getting closer. She is awfully anxious to get back to Grant...
Tuesday update: The port was successfully put in this morning. It was decided to postpone chemo indefinitely to get her through this current crisis. That's hard to hear on one hand, because it is a way of fighting. On the other hand, it's a relief to hear because I can't imagine her enduring any more discomfort. She had a relatively comfortable night, although not as good as the one before. She ate a few bites for breakfast this morning, which is a positive thing.
Monday update:Kate had a more comfortable night. They have decided to put in a port on Tuesday, so that she has the option of going home with the IV in place. The goal would be to get her home by Wednesday am. Dr. Seng will be in later today to discuss the chemo situation. We're reading the Caringbridge entries to her and she is very touched by all your love and prayers. Thanks to all
Sunday update: Kate is resting a little more comfortably today. She is back on the morphine drip which keeps her the most comfortable, however, pretty much out of it. She is entertaining this way, though, as she tells us things that make no sense. She is obviously having good dreams. Saturday update: Kate continues to struggle with the pain, and swears part of her discomfort is the bed she is in. As you all well know, no one will ever discount her opinion again, so we are awaiting the delivery of a different bed. If that doesn't work, they may discharge her so that she can get back to her own bed, but based on her day so far, that probably isn't the wisest thing to do. You may have noticed several entries from Brett's patients. Brett resigned his job this week to be home with Kate and Grant full time. Prayers today can be for freedom from pain, and continued courage to deal with the "c".
Friday: We are back at "Hotel Abbott". Not sure how long Kate will be in the hospital. She had her first chemo session on Wednesday and was ok. Then toward dinner time, she started struggling. She ended up back at Abbott, by ambulance this time, in the "worst yet" pain. It does not appear to be related to the chemo, but who knows. Her platelets have dropped from 150,000 to low 60,000s. Her hemoglobin has dropped to 7, putting her in the anemic range. Today, they gave her a blood transfusion to try and bring that back up. They have postponed the second part of the chemo until Monday. We aren't sure what's going on right now. The "c" has definitely been more agressive (which also means it is more likely to cave to the chemo). Her arms are causing her pain now as well. She now has us open doors for her and carry her purse to avoid any unnecessary pain. (I'm telling you this so that if you are with her, you understand if she doesn't get up or asks you to help with something that seems simple.) She doesn't really need anything right now but to know you're out there. She loves mail and,of course, watches this site so your many entries are appreciated. Neil and Tori took Grant up to the lake for now. He's thrilled to get another "vacation" at the lake with his cousin. We'll keep updating as we learn more. Love to all, Maria
Friday, September 21, 2007 11:24 AM CDT SATURDAY UPDATE: The tumor is stable so chemo it is, starting Wednesday. Dr. O'Phelan passed away peacefully with his children by his side on Friday evening. He was a much loved person, always focusing on the wonders of life and how much there was to learn. He will be missed by many.
Friday: First, thanks to everyone for the messages of support regarding my father-in-law. He is at home, surrounded by his family as he makes his transition. I have been struck every time I am in this sitation at what awonderful tribute it is to a parent, to have his children care for him at the end. Harvey has told us he is ready to go and is having a peaceful end.
Kate has had a busy time with scans. First the CT scan in Iowa, showing more tumors on her spine. Then a PET scan (which shows earlier stages of cancer) on Thursday to determine exactly where she is at before they determine a treatment plan. The PET scan shows the cancer is continuing to be very aggressive. It is now in her bones (arms)and there is a dangerous tumor near the top of her spine. Today she had an MRI to determine if that is stable or not. If it is not stable, she will likely begin radiation. If it is stable, she will begin chemo. Either way, the treatment starts next week. We are praying for stable, since unstable presents more of a threat to her well being (protential problems with breathing or paralysis if I understand it correctly). Kate cut her hair by 5 inches this week and will probably cut it again this weekend. She is trying to get Grant used to seeing her with less hair. She is also looking into the wig options. Dr. John thinks that he can help keep most of the side effects at bay, but she will experience extreme fatigue. The chemo process is 2 long days, a short day, then 21 days off.
Kate has asked that each night that you think of it, at 7pm, pray "please help Kate get better". If we all do it at once maybe it will hold more force!
Love to all, Maria
Sunday, September 16, 2007 3:07 PM CDT I am writing in place of Maria this week. Sadly, Maria's family has been battling cancer from both sides of the family - The Hunt side as well as the O'Phelan side. Maria's father-in-law, Harvey O'Phelan, has advanced stage melanoma cancer and they don't think that he will live through the week. In typical Maria fashion, Maria, Tim, Conor, Timmer and Coley have all been helping out by spending nights there, shopping for him, comforting him, planning dinners at which Dr. O'Phelan is able to gather with friends and relive their memories... You are my super hero Maria. I am so sorry you all must go through this.
As for me... Unfortunately, I was booted from the study as I have "many" new tumors in my spine. I knew this a month ago based on the fact that the pains in my back were progressing. We are supposed to hear from our doctor this weekend. Nothing yet. We will keep you posted.
Hug your little ones.
K.
Monday, September 10, 2007 9:37 AM CDT Just a quick update: Kate has been doing reasonably well since she got out of the hospital. Her pain is real and a new reality, but she was able to keep it tolerable most of the week. We even ventured to a kid's music festival with Grant Saturday morning. It was a beautiful morning and the musicians were very energetic, so we didn't have to be :)
Grant enjoyed it but his favorite part was riding the golf cart from the parking lot to the festival. He discovered limosines this week and now wants one. He and Brett went to a Gopher game, where a limo was sitting. He was amazed, especially when he say a TV was on inside the car. Then a second one pulled up and he exclaimed, "Another one?! I'm speechless!!"
That will be the day....
Love and thanks to all. Maria
Friday, August 31, 2007 1:03 PM CDT 2nd UPDATE (Tues evening): She's out already. That's good, cause it means they are learning how to more quickly get the pain under control. She is very happy to not spend another night away from Grant. UPDATE (Tuesday, 9/4): Kate is back in the hospital after another severe pain episode. Looks like the trip to Iowa will be postponed. The docs haven't come in yet to give us an idea as to what is happening this time. We'll keep updating as we learn more.
We leave for Iowa next Wed - Yikes. I will have a CT scan, Octreotide scan, blood work and another neurology exam. The doctors chose eight tumors to look at. They will compare next weeks CT to the one I did in June. If there are any new tumors or if they determine that there have been 20rowth,I will be kicked out of the study. We welcome any prayers, well wishes etc... It is definately nerve racking.
Thank you to all of our family members and friends who helped us while I was in the hospital. Thank you Neil & Tori for taking care of Grant next week. I hate to leave him but he will have a blast with his cousin, Espen.
We are having "Family Night" tonite. I told Grant that he is in charge of making dinner and that we will be his helpers (we are making pizzas). Grant was estatic about this idea. He LOVES to be in charge and boss us around! It will be a fun night!
We hope that you have a wonderful holiday weekend! Much love to you, Kate, Brett & Grant
Happy Birthday Thom!!!! Good luck with the flood clean-up - wish we could be there to help. Thanks for the photos Conor!!!
Tuesday, August 28, 2007 10:13 AM CDT Kate, Brett and Grant are continuing to adjust well back to being home. Kate's pain episodes continue, but have been managed at home. The hardest part for Kate is having to lay low. She would much prefer to be off running around, grabbing lunch with friends and making a quick stop at Room and Board! Her biggest need is to be with Grant and Brett, though, and that she is able to achieve. (Kate here - to my defence, I have been to Room & Board one time in two years...But it was fun to look!)
Next week, it is back to Iowa. Grant will be going with since it is for a 2 day appointment. This will be the first evaluation of the Iowa study results, so keep your fingers crossed.
Grant is continuing to move from the toddler stage to the little boy stage ever day. He has an amazing imagination (as you can see from the pictures). He will probably be a movie director someday as he is very good at giving us all of our parts in his play, including strict instructions to "say it with a roar" or "move this way". Look out Stephen Speilberg!
Maria
Tuesday, August 21, 2007 7:43 PM CDT She's home!! Now our job will be to keep her moving slowly until she's fully back to par. Kate still looks lovely and if you didn't know she was sick, you'd never guess. But she is still quite sick. If you are coming to visit, please check ahead of time. She loves seeing people but needs to keep the visits down to 15 minutes and not too many in one day. Her energy level is still pretty low. We are taking this one day at a time and trying to get her back to where she was, but for this week anyway, the reality is that the pain is real and the energy level is low.
If you are able to help with meals assistance in September, please sign up at www.lotsahelpinghands.com (email me if you don't have access yet). Thanks! Your prayers and positive thoughts are making a difference.
Maria
Sunday, August 12, 2007 11:19 AM CDT TUESDAY: She's home!! Now our job will be to keep her moving slow until she's fully back to par. If you are able to help with meals assistance in September, please sign up at www.lotsahelpinghands.com (email me if you don't have access yet). Thanks! Your prayers and positive thoughts are making a difference. MONDAY: Things are improving. If she stays at her current level or better through the night they will discharge her and get her home in time for breakfast on Tuesday. So keep those positive thoughts coming...we're almost there!
SUNDAY: Still here. Yesterday, they tried transitioning Kate so they could get her home. They removed the IV and other tubes, but by midnight they were back on again. Today they are going to try again. Their goal is to get her pain managed with oral drugs so she can go home. She is quite antsy! Grant comes to visit each day but, as expected, that is not enough for Kate. She won't be satisified until she is back in her own home. Pray for pain control via oral meds.... FRIDAY: Kate slept after the block but woke up around 4 am in tremendous pain again. We've been told is can take a couple of days for the block to work so we haven't given up hope on it. They are switching her meds around and continue to monitor her. This afternoon she has been better again. As I type this, she and Grant are cuddled up watching cartoons together and she is quite lucid. Let's hope that is a sign of things to come. THURSDAY: It's been a journey of ups and downs. Kate starts feeling better then enters another pain episode for many hours! They are going to try giving her a cortisone block in her back to see if that helps. The theory is that maybe the spine tumors are swollen and pushing on nerves, causing her the hip and leg pain. If it works, she might get out Friday, but it won't be today. Keep your fingers crossed. The morphine results are certainly entertaining (like when she stated to the nurse "hey, you kissed me this morning didn't you?" Then when the nurse said no, she said "Maybe I dreamt it..or maybe you dreamt it!" As funny as she is on morphine, we'd rather she wasn't on it so let's go for cortisone results.
WEDNESDAY: Quick update for Wednesday. Kate is feeling better and resting more comfortably. Once again, no new revelations about the source of these episodes. She is chomping at the bit to get out, but that will not be until tomorrow at the earliest- if she continues to do well. More later.
MONDAY: Kate just updated the journal so I'm leaving it on this page. She claims she's never posting again because she ends up in the hospital after each post! She started having pain again last night and ended up in ER Monday am. She is admitted onto the oncology unit at Abbott. The CT scan did not show any difference from June's (which is great). Now they are going to do an MRI. She is complaining about hip pain, which is new, so they are going exploring. We're getting more experienced at this so she is already progressed to where she was on about day 3 last time. I'll update later when we know more...
SUNDAY: Grant has informed me that when he "grows big", he is going to marry me. What a compliment! Brett asked Grant what will happen to him if Grant marry's me and Grant told him, "You'll be ok Dad. You can marry Nate & Heather."
Sorry for the lack of posts lately. There is always so much to say, so much to be grateful and so many concerns. Overall, we are doing well. The love and support we receive continues to carry us through the murkiness of the journey. Thank you to our incredible circle of friends and family - you have no idea what your offerings of help and words do for us. Brett & I have gained 10 lbs over the past few months thanks to the many meals, care packages etc... Thanks for the awesome TLC.
Brett promises to post early this week (ha, we are the champions of procrastination but we will try). We hope that you and your loved ones are safe. Enjoy these last days of summer. K.
Thursday, August 9, 2007 8:14 AM CDT Kate and Brett are in Iowa today for round 3. (Grant is with Mindy: thanks, Stu and Mindy!) The Iowa trip involves blood monitoring, obtaining another month's supply of study pills and the dreaded shot (although they'll wait to get back to Minnesota for that for insurance purposes). They'll head back tonight. We've learned that the next week will be less comfortable for Kate as the shot makes her pretty nauseated.
All in all, things are going well. Although Kate has limited energy, her mediciations handle her pain and nausea most days. You'd still never know anything was wrong if you ran into her on the street. Both Kate and Brett maintain great attitudes are are enjoying their lives, raising Grant.
I'll need to get you a new Grant story. The one I learned this week is probably not appropriate for the general public. (Use your imagination!)
Love to all, Maria
Wednesday, August 1, 2007 7:42 AM CDT Just a quick update...I'll try to do a longer on the weekend. Kate, Brett and Grant spent the weekend at Mom's lake. Grant, as usual, had a blast with his cousins. Kate had a "not as good as usual" weekend and had a rough ride back on Sunday. She's been battling with nausea and pain all week. Not sure why. I'll add more info later (including this week's Grant story).
Maria
Friday, July 20, 2007 11:23 AM CDT My last posting was Friday the 13th and I jinked Kate! She started throwing up again on Saturday. The weekend was rough, but she's on the other end of it now. We think the shot she gets each month as part of the Iowa study might be a contributor to the rough periods. The good news is that she made it through this bout without ending in ER (although she came close). Her sense of wellness is a roller coaster ride. She will have some great days, followed by some really rough ones. For example, she took more pain killers in the past 24 hours than she has taken in the entire week before. People are asking me if Kate is better. Her blood counts are better, which results in increased energy levels. It doesn't mean anything is happening with the tumors though. She won't have her next scan until September, so we are just enjoying the higher energy levels for now. Instead of being a "one-hit wonder" (able to do one thing a day..a shower, a trip to the coffee shop, a visit with a friend), she is now a "two-hit wonder". So although she has doubled her energy level, she has a ways to go! Here is this week's Grant story: After Grant's swimming lesson, Brett and Grant hit the shower at the gym. Grant was looking at another man in the shower and loudly offered his observation: "Look Dad, that man has a plumber butt!" Luckily, the man told Brett he was the father of 3 little boys himself and knew that locker rooms were rough places to remain tactful! Thanks to all for the meals and continued support. It really helps keep Kate and Brett's energy focused on the right things. Love to all, Maria
Friday, July 13, 2007 4:15 PM CDT We really need to update the picture. Sorry folks! All is well at the Hunt-Mortenson home. Kate tolerated having a million relatives around pretty well. She had a few mild bouts of pain and nausea but is getting pretty good at figuring out how to get them under control before they get to be too much. Brett and Kate went to Iowa on Sunday for a Monday meeting with the team there. Her counts continue to be up, which really helps her energy level. As you all probably recall, last time she received her daily study pills and a shot (which I can never remember the name of but she hates it..due to side effects that I am not allowed to talk about...and it costs around $1000 per shot...thanks Medica.) Twenty four hours later she was in ER. No one knew if that bad bout was from the study pills, shot, trip or was just a coincidence. She has been sucessfully taking the study pills since that, so that was ruled out. The team decided to have her receive the shot this time in Minneapolis so she could be monitored. We are at 72 hours and she hasn't had a similar reaction. The trip tired her out but she is rebounding well. That leaves the coincidence. That means she's still in the study, which is good news. Grant is really getting independent on his bike and has taken 2 pretty good spills so far. Thank God for helmets! He gets back on and keeps going though. Pink may be one of his favorite colors but he is still a tough guy. Hope you're enjoying our cooler weather and your summer. Thanks to everyone for everything. It's getting better! Keep up the good work. We couldn't do it without you.
Love, Maria
Tuesday, June 26, 2007 9:18 PM CDT Update: Kate's blood work continues to be up and you can really tell. She has done very well throughout the Nisswa vacation. Her energy level is high and so is her appetite! She is constantly scrounging for food. She is pretty tired today and they are about to head back to the Cities. Hope you all had a great 4th. Maria.
You just gotta love summer. Kate seems to thrive in the hot weather. I was playing catcher on the front steps tonight as Kate pitched to Grant. He really gets into his batting stance and Kate is getting her fastball back day by day. We have been having a good week since Maria's last update. Kate seems to be getting some of her strength and stamina back. She is tolerating the trial drug pretty well and has a good solid appetite (I can hear her rustling in the fridge as I write). I really believe that she is having a positive response to this treatment. Kate's full family is coming for the holiday week and our excitement to see everybody is only matched by Grant's to see his cousins. A few thoughts that we keep meaning to put on the site: -Kate and I were talking recently about how we seem to keep up a slower but somewhat normal daily existence. She was saying that without all of the help that we recieve from everybody, this just wouldn't be possible. So to everybody that has helped in so many ways; thank you for providing us our own little slice of normal. -We went to a gathering at one of Kate's angels (her nurses from MOHPA) on Sunday. They closed the transplant center at our Oncology office recently because of money and politics. This is the sad truth of modern health care. Ironically, this is the center that took us on when nobody else would because of........(wait for it)...politics. So we spent a beautiful sunday on our hosts deck. In attendence were our hero nurses and oncologist. The stars of this gathering were Kate and five other cancer patients and their significant others. All of these amazing people had slogged through their own battles at the former transplant center. There was no complaining. There was only smiles and an amazingly palpable level of proper perspective on life that I wished everybody could witness. Looking across the room at how these people continued to aggressively experience life was humbling. Three people were in the midst of yet another relapse. One had just opened a new business, another went back to college to learn horticulture after retiring from his life's work as an attorney. No one complained about anything except not having enough energy to do all they wanted. We will try to write more later- between innings. B
Monday, June 18, 2007 11:23 AM CDT Kate clicked her red heels together and said "take me home to Minneapolis" and she made it! She is a different woman when she sleeps in her own bed. Her pain is under better control with her new meds. She still has a pesky, middle-of-the-night bout that gives her trouble. Grant loves having his mommy home. He made Brett a great plate for Father's Day and then gave him the greatest present of all: he successfully used the toilet all day! He was very proud of himself.
I've been secretly asking people to write letters to Grant, telling him how they met his mom, why they became friends, why they have stayed friends and a story about their adventures with her. It was going to be a secret book for Kate. The cat is out of the bag, so I'm now going public with the message. Kate has loved the letters that have come in so far and is looking forward to more. Please consider writing a letter. We will make a wonderful book for Kate, Brett and Grant to read together. The letters can be emailed to me at maria.ophelan@securian.com or ophelan@comcast.net. If you prefer a handwritten letter, please mail it to me at: Maria O'Phelan 1665 Summit Avenue Saint Paul, MN 55105
Thanks to all during last week's events. Hopefully, we are in for a calmer period now. Love, Maria
Saturday, June 9, 2007 5:39 PM CDT Thursday update: She's out!! Home again! Wednesday update: Still here. Today she has had more nausea. They are working on the "b" issue, and changing the pain meds around. They will try taking the Iowa drugs again and monitor her. If all goes well, she might be discharged tomorrow night (does that sound familiar)? We'll be printing out the Caringbridge comments tomorrow and bringing them in to read, so if you want to leave a message.... Monday update: Kate is still in the hospital. I haven't been there today, but the word is that they got her up to walk (which pretty much wore her out). They are still working on the pain management and want to keep her another day. Grant will be up to visit today, though, so that should help. More when I know it.... Sunday update: Kate is better today. They have cut her drugs in half and the pain is tolerable. She is more alert and wants to go home to her little monkey. Maybe on Monday. Until then, we'll just keep on keeping on.
Saturday:Kate was accepted into the clinical trial in Iowa and given her first pill around 1pm on Thursday. They returned to MN on Thursday night. During the night, the nausea set in. By Friday morning, she was quite ill. Then the pain, which has been greatly diminished the past 2 weeks, came back with a vengence. When it was no longer tolerable, we went down to ER at Abbott. After 45 minutes or so, they knocked the pain down to a level where she could finally lie still. She was admitted to Abbott, where the pain continued to take over in waves. She'd get it under control and sleep for an hour, then the pain would get her under control and so on and so on. Finally, around 3 pm this afternoon, she fell asleep and has been sleeping for the past 2 and a half hours. When she opens her eyes, she looks at Brett and me and says, "you too are sooo cute", grins and goes back to sleep. (Those of you from St. Bens and ADP probably have seen this behaviour before, but probably not from morphine, and there was probably music and dancing involved.) It seems it is always a Friday night when Brett and Kate end up in ER. They really must plan better date locations. As Kate told Brett this afternoon, "Next time, bring your other girlfriend!" (and then drifted back to sleep). Why the pain? We don't know. The CT scan does not show any problems like she had last time (remember, I am not allowed to use the "b" word.) It didn't really show anything that we didn't already know (except the tumor mass pushing on her "b" is a little larger). The staff here is working with Iowa to see if there is anything related to the new drug that could have triggered it, but they don't think so. It appears to be a "crisis", like she has had before, and like before, will come out of and have some easier times for awhile. They have decided to stop using the Iowa drug for 2 days, just to eliminate it from the situation until they get the pain under control and figure out what she needs to go home. More updates will follow as we learn more.
Maria
Monday, June 4, 2007 10:20 PM CDT No, I'm not writing from a truck stop in Albert Lea. Our trip tonight was POSTPONED - not canceled, just pushed off. Good news, I was accepted into the trial at U of IA!!! Hooray! Frustrating news, the U of IA's legal department has to approve and rewrite the consent form before they are willing to treat me. We hope to leave for IA Wed. eve and receive the drug on Thurs. Keep your fingers crossed! Our journey has had more detours than MN roadways in the summer.
Thanks for checking in and continuing to keep us in your hearts and prayers. Love, Kate
Thursday, May 31, 2007 7:50 PM CDT A short pause on the journey. Kate came close to getting rejected from the trial today but didn't. She also didn't get accepted. Apparently, her platelet count needs to be 100 or higher and her's hasn't been that high in almost a year. They ran her blood work and it came it at 95! The highest it has been in a long time. Alas, it needs to be at 100. They did agree to request an exception from the board of doctors that are overseeing the clinical trial. They meet on Monday. So they are coming home Friday, and hopefully, returning on Tuesday for the first treatment.
They referred to the drug as the "puke" drug, so nausea is in the cards. They do have some drugs to help with that including a marijuana derivitive. (Neil, she said you'd be happy to hear that!)
Looks like another suspenseful weekend for all of you. Tune in on Monday for another exciting chapter of "Kate's Journey" and see which road she'll travel down next. In the meantime, hug those you love, enjoy the summer breeze and send all positive energies Kate's way.
Love, Maria
Friday, May 25, 2007 1:15 PM CDT Kate is headed up to Nisswa for a weekend with Mom. The three days of relaxation is well deserved. The initial biopsy results are that the new areas are paraganglioma. They have made a decision to pursue the Iowa clinical trial and have a screening appointment on Thursday. If she is accepted, she will receive her first treatment on Friday. Then she makes the return trip to Iowa every other week. I'm not sure yet what types of side effects are expected. If she is not accepted to the Iowa program, she will immediately begin chemotherapy. Those side effects are only too well known by all of us.
Here is the Grant story of the day: Kate wanted to see American Idol so she convinced Grant to watch it with her. It was the show that Melinda Doolittle was voted off. Grant asked Kate why she was crying but smiling. Kate explained that sometimes people cry when they are happy. She said when Grant made her the Mother's Day flower, she cried because it made her so happy. Yesterday, Grant made her a heart and told her it was because he loved her so much. She hugged him and he cuddled into her neck and said, "are you crying yet, Mom?"
May your Memorial Day be full of family making you cry from happiness.
Love, Maria
Tuesday, May 22, 2007 8:13 AM CDT Tuesday, May 22, 2007 7:56 AM CDT It's been a week of tests, and it seems the medical world is testing Kate and Brett's patience as much as anything. There are several directions they can take for the next step: chemo, Switzerland, cyberknife and a new clinical trial in Iowa. The doctors are debating them and running tests, but no one seems to be in charge of making the decision. There is still some debate of whether the new spots are tumors or infection. A PET scan yesterday "was hot all over", including places where no tumors show on the CT scan. That confuses everyone. So on Wednesday, they are going to do a biopsy of one of the hot spots in her neck. That is safer than doing a lung biopsy, and should tell them if it is tumor or infection. (We're praying for infection in cause you were wondering.)
Kate has had a better week in general. Pain continues to be the primary issue. The pain meds and sleep seem to help, but you sure can tell when the 2 hours is running out and she's near the time for another pill.
Brett continues to be strong, supportive and tired! He is equally amazing to Kate in his ability to keep fighting.
And of course, Grant continues to put the humor in the household. Maria:"Grant, you need to get dressed before we go outside." Grant: "What would happen if I went outside in my pajamas??" Maria:"People would say, 'Grant, you're still in your pajamas!" Grant: "Then what would happen?" Maria: "Nothing" Grant: with a shrug "Then why should I get dressed."
Oh, just wait until he's 15 and using his smarts on getting out of curfew!!!
Love to all, Maria|
Wednesday, May 16, 2007 4:56 PM CDT There is so much to say... Brett & I tell each other that we will update the journal each night but then the task seems too daunting. Words are never enough to express the tremendous amout of appreciation we have for all of you. It is a very humbling experience. Thank you for the prayers, well wishes, banana breads, meals, flowers, cards, notes, errands, toys, cookies, pictures and most importantly, the love you send our way.
Despite the medical mishaps, we had an incredible time in Florida! Did I mention that we took a mere 800 (yikes) photos???!!? For me, the best part of the trip was watching Grant playing in the ocean and hearing him squeal as the waves lifted him off his feet. Grant is convinced that he was really surfing. We will try to write more on the trip once we post new photos. A HUGE thank you to Sharon at Disney, Rebecca at Memories of Love, the Noels for use of their condo and to Heather for setting up our hotel stay!
We had a great Mother's Day! I was feeling well so we had breakfast at Maria's with the O'Phelan'a and my Mom. After a long snooze, Brett, Grant & I spent the afternoon at Minnehaha Falls. It was such a great day. As soon as I woke up in the a.m., Grant announced that he had a present for me and that he will give me the flower which he had made, later. He was SO PROUD to give it to me and I have never received a more touching gift.
I had a difficult week leading up to Mother's Day - both physically and emotionally. I spent a lot of time thinking about what a wonderful mom my Mom has been and continues to be. The idea that I may not be able to be that same type of person for Grant is more painful than I ever imagined possible. I love that little boy more than anything in this world. Without getting into detail, it is for this reason that I will not write on this site very often. There is so much that I want to say to Grant and I want to spend my time writing to him. So, Maria et al will provide most of the updates moving forward. Unless of course, we go back to Switzerland. Maybe it is the Muesli that brings out the writer in Brett.
There is still much hope for stable disease. The docs in the hospital were a bit alarmed by my scans but they were not familiar with this type of cancer either. We have MANY tests over the next week that will provide us with an idea which treatment route to take. We are frustrated with hold-ups and mistakes. With that said, I will get the tumor marker results tomorrow and hope to have an idea of our next step by next week. Time is ticking...
Again, I don't know how to adequately express appreciation for all of the support. The circle of friendship and love by which we are surrounded keeps us going. I believe that the love you put out returns ten-fold - you all will be bathed in love.
K.
Thursday, May 10, 2007 4:41 PM CDT Another day of medical treatments, this time for a lung biopsy at United Hospital. Our dreams and hopes are that the lung problem might be an infection are not totally shattered, but the doctor thinks we likely are dealing with malignant tumors. Kate was given enough meds and pain killers to put an ordinary person to sleep for 6 hours (per the doctor) but she was sitting up talking and now, 4+ hours later, she still hasn't slept. Her first meal consisted of a latte' and a large dairy queen cone. While she was indulging herself, she looked up and said: "This is as good as it gets."
We now have two options: chemo, or a clinical trial in Iowa. Neither is a sure bet. If she takes chemo which is far from a guarantee, she can't do the trial later, and there are no firm results from the trial as of now. The trial would not require staying in Iowa, but only being there one day every two weeks while she takes the meds or other treatment locally. Her oncologist and Dr. "O",from Iowa, are communicating to determine whether her blood is in good enough shape to do either of these, but we are eternal optomists and are convinced she can, and it will work.
Meanwhile, thank all of you for your prayers, cards, flowers, meals, whatever. Each and everyone of you mean a lot not only to Kate, but to all of us. Such support from so many people is a wonderful tribute to Kate, Brett and Grant.
Kate's Mom, Jeanne
Friday, May 4, 2007 1:03 PM CDT 05/08/07: I believe if I have everyone who has asked to help do one thing, we'd be good for 6 months. You are an amazing group of people and I am also in awe of what an amazing person Kate is for having found all of you. I will be getting organized soon with the help list and respond with specific assignments. Kate has asked that I tell you she has 400 pictures from Florida, so we will soon update pictures as well. Timmer gets home this weekend from his first year of college (Yikes, how did that happen so fast?)so we'll put him in charge of pictures. She also asked me to tell you that the newer caringbridge sites automatically send you notification when there is a journal update. Hers does not so keep checking!! Pain management continues to be her biggest issue. The morphine makes her feel so lousy, but the Vicodin doesn't handle her pain. She is continuing to work with a pain doc to figure it out. Today's assignment: pray for pain relief. Love ya, Maria 05/07/07: Thanks for the many responses to our requests for help. You are all amazing. Several people have asked about stopping by to visit. For this week, anyway, we are asking that you not stop as her pain and nausea make it difficult to visit (or even chat on the phone). She loves cards however, and is working a creating a "Circle of Friends" display with all the cards she has received over the past 2 years. She has kept every card. So feel free to keep the postal service busy!
05/04/07: On to a new stage of the journey...
Kate's lung scan indicates that the two spots on her upper, right lung are most likely tumors. They are an inch each. There is also a new one starting in her lower right lung. It is significant that they are new tumors, they have doubled in size since March and that they are the first ones to have actually entered an organ. (The others are sitting outside of the organs.) It is still "within the realm of possibility" that the spots are an infection.
Next steps: the oncologist and pulmonary doc will decide whether to biopsy the lung for a definitive answer or go with the assumption that they are tumors. Based on that, the treatment debate will begin. Cyberknife, San Fran, and Iowa docs have been contacted for their opinions, as well.
We are declaring today a "day of moping" then will move to to being positive and hopeful. We encourage you to do the same.
We are in need of lots of positive energy, encouraging thoughts and physical assistance. Specifically: 1. Light housekeeping 1x week. (kate has someone who does the deeper stuff every other week.) 2. A weekly Target run. 3. Meals 4. Someone to pick up Grant from daycare at 3:30 on Mondays and Wednesdays. 5. A Thursday play date for Grant (morning or late afternoon works.)
I have received some emails offering help already and will be getting back to you shortly on those.
Thanks to all again. Knowing this support group exists makes each step along this journey easier to manage.
Maria maria.ophelan@securian.com
Thursday, May 3, 2007 1:18 PM CDT Kate is being discharged this afternoon. The next two weeks will be for recovery, while the new pain management regimen kicks in.
Thanks to Stu and Mindy for keeping the boy that last few days. Hopefully, he kept you as entertained as you kept him!
We have a fair amount of help through the weekend. We may need some help next week (at Kate's: keeping Grant going and Kate recovering).
If anyone can assist, please let me know at maria.ophelan@securian.com.
Thanks!
Maria
Wednesday, May 2, 2007 7:53 AM CDT Wednesday morning update:
Actually, I don't know anything new since last night so this is really a Tuesday night update. I have been informed that I can update this site, but can't use the words intestine, bowel, urine or any of the slang words that go with those. So, I will simply be referring to "the procedure".
Kate's procedure to clear out her obstruction was successful. Apparently, when such a procedure is completed, there is a fair amount of pain afterwards. As in, they had to give her 3x the pain meds afterwards that they were giving her before. They invited her to spend another night and since the meds had totally knocked her out, it seemed like a good idea. Brett stayed with her again last night while Uncle Thom stayed with Grant.
Our hope is that she will return to her normal routine now, but we'll see how the next few days go. She will be rescheduling the pulmonary test and Mayo visit once she is back on her feet.
I'll fill in more later as I get details on how today is going.
Maria
Tuesday, May 1, 2007 7:38 AM CDT Good news! The initial bone marrow biopsy results show that her bone marrow is holding up well. (That's as medical as I get. When Brett or Kate are able to write again, I'm sure they'll give you all the clinical details.)
Not so good news. Kate is in the hospital. They are trying to avoid a bowel obstuction (and as clinical as Kate is, she'll be mad at me that I mentioned "bowel"). Yesterday they ran a bunch of tests and today they'll figure out what to do (finally!). She'll probably be home tonight.
Grant had an unexpected sleep over at our house. He thought it was great: dilly bars, Nerf guns and sleeping in the same bed as his cousin, Coley. He may never go home! (And his parents may never let him stay again.)
Grandma Jeanne and Uncle Tom came to help out. (Happy birthday, Mom!).
Tomorrow marks the 2 year anniversary of Kate's diagnosis. We are so grateful fo the outpouring of support the past 2 years. It has been an amazing and humbling experience. We love you all for helping us along the way.
Maria
Thursday, April 26, 2007 3:41 PM CDT Update from yesterday:
Another ER visit last night! She was on her way to have a lung CT but called her doctor to ask about a rash that she was developing. The docs were concerned about the red rash she had developed called, petechiae. The rash comes from having low platelets. Thankfully, her platelet count was low (55) but not at a dangerous level. Kate is very wiped out. Being in ER from 5pm - 1am did nothing for her well being. The biopsy still went on this a.m. She is resting now and hopes to lay low until Mayo on Monday. Thanks to Sandy, Joan and Alley who have been pitching on the last few days to help with Grant.
Maria
Wednesday, April 25, 2007 10:19 AM CDT The Mortenson clan is back in Minnesota and just in time for 80 degree weather. What timing! The trip was great and Grant was an angel throughout (most of the time anyway). It ended with a trip to ER, allowing the Florida docs to experience paraganglioma. Kate felt good through most of the trip, but started getting issues toward the end. Nothing new popped up on the scans they did, so they gave her more pain meds and sent her home. Now she is going to begin a series of medical appointments. Today, she sees the pulmonary doc to see if the infection in her lungs has cleared up. Tomorrow she has her bone marrow biopsy. Send all positive thoughts her way for that one. She claims she'd rather go through child birth again. On Monday, she heads to Mayo to see if they have any futher recommendations. We'll try to keep the site updated as we hear results. Thanks for your support. Maria
Sunday, April 15, 2007 9:27 AM CDT Kate, Brett, Grant and Grandma Bop are in Florida for 10 days. They will be spending time at the beach and then at Disneyworld. Picture them laughing, relaxing and feeling no pressure. Wish it upon them. More updates when they return. Love, Maria
Monday, April 2, 2007 7:58 PM CDT We met with the Cyberknife doctors today. It was a long but interesting meeting. To summarize, the doctors have agreed to work with me should Brett & I decide we are ready. It carries great risk and weighing the facts is difficult beyond anything we could have imagined. We are terrified to move forward and we are terrified to sit still.
We have many appointments coming up - the pulmonologist can't work me into the schedule until the 25th of April despite the call made by my Oncologist. Incredible. I certainly hope that whatever this thing is, it is not contagious. That same week, I have a bone marrow biopsy and will return to the Mayo to meet with their Endocrinologist. Thus, the 'c' vacation comes to an end.
Grant is a happy little man. He now enjoys playing Go Fish, Candy Land and other games. He still perfers active play, going to the park, running and crazy play but it is nice that he also likes to partake in more mellow activities! Grant suprised us a couple of weeks ago by showing us that he can add! If you ask him to add 3 3, 4 1 or any combination less than 10, he can do it! He will probably forget how to do it in another month or so, but as of now, the boy can do addition! Grant continues to inspire and light my days. He has really been in to saying prayers before dinner. They usually start out with him saying something like this; "Dear God, Thank you for our food. Thank you for (whom ever we might have played with that particular day)." He will then look out the window and say thank you for whatever he sees. Usually it is the birds and the houses. Sometimes it is the weather or a squirrel. It is adorable. I am quite certain that he is an old soul.
With love,
Kate
Thursday, March 29, 2007 9:53 PM CDT We met with our Oncologist today. New info: CT shows the majority of tumors are stable, a couple of had increased in size slightly. Tumor marker was 178 which is statistically the same as the previous (161). We are disappointed- we are only satisfied by tumor shrinkage at this point- but are not overly worried about advancing disease with the marker being stable. Regardless, it is a reminder that we have to get back to finding what our next step is going to be. We have been taking a "c" break as of late with the good news we had been receiving. As for now we are excited about going to Florida in two weeks. The only person more excited than Grant is Kate herself. We will meet with a pulmonoligist and do a bone marrow biopsy when we return. We are also meeting with the doc's at Cyberknife on Monday. Brett
Monday, March 26, 2007 10:41 PM CDT Perplexed is the word of the week. We DID get the CT results today. At best, we are perplexed at worst, well, that is too difficult to articulate at the moment. Last month, my tumor marker fell to an all time low of 161. Logically, this would have meant that the tumors in my body were shrinking or had shrunk. Unfortunately, this isn't the case. Perplexing, frustrating, devastating, disappointing.... The overall impression is that the majority of the tumors are "somewhat stable" but there are some that increased in size. There is one in particular that I am concerned with and am anxious to ask my Oncologist what we plan to do (our mtg. with him is Thurs.). The good news is that the radiologist feels that the two nodes in my lung are "infectious" in nature (I am also anxious to find out what it is and what the plan is to get rid of it???).
We will get the new tumor marker results on Thurs. It is my hope that the number is 161 or lower and that the increases seen on the CT are due to tumor necrosis. It just doesn't seem logical that they can be increasing while the marker is dropping? Please keep your fingers crossed.
K.
Friday, March 23, 2007 10:23 PM CDT Still no news...we are perplexed. Apparently, the radiologist hasn't read the report as of yet?? Our guess is that they are having a hang up getting the lung CT from last Friday (I was in the ER with chest pain. Drama... drama... no embollism but they did see something on the lung which is most likely only a virus or infection of some sort). My tumor marker was down to 161 last month so we are expecting SHRINKAGE! I have absolutely no patience and called my nurse about every hour. Sorry Becky!
The stress test went well today. Although pathetically out of shape, the test showed no problems with my heart. I will wear an Event Monitor for the next month to record any irregular beats but all should be well.
We wish you a wonderful weekend and will update after we get the report.
Please send positive energy and prayers to a little boy named Joel tonite. Thank you. K.
Thursday, March 22, 2007 4:19 PM CDT No news yet... LeAnn called to tell me that the report hasn't been read yet, which is odd being that it is usually read within an hour or two. My CBC blood work fell down a bit again but are ok. We will update later tonite if LeAnn gets the report (which she may). Otherwise, we will update after the cardio tests tomorrow.
Great love to you today.
K.
Tuesday, March 20, 2007 5:04 PM CDT CT is this Thursday - the 22nd. Echocardiogram & stress test on Friday. Tumor marker will be drawn Thurs and get results next Thurs.
Sunday, March 11, 2007 11:07 AM CDT Bloodwork: Platlets - 83 White Cells - 2.4 Neutrophils - 1.4 Hemoglobin - 10.7 Latest Tumor Marker - 161!
The next CT is scheduled for March 24th -- Keep your fingers crossed! We have been "on cancer vacation" for the past month or so and it is a great place to be. After we get the CT results, we will begin our search for the next treatment plan. I received an email from the doc's in Switzerland which stated that it is unlikely that I will be eligible for another treatment due to the continued low CBC blood counts. They stated that most patients blood counts return to normal levels after 6 to 12 weeks. Nothing is set in stone but it is a reminder that we need to continue our quest to find the next treatment. In my mind, that means convincing AstraZeneca to allow me access to their drug, Zaxtima. It is terribly frustrating, heartbreaking to know that their are many others fighting Paraganglioma who do not have access to any type of treatment at the moment. The pharma company that had been putting out the MIBG radiolabeld drug is no longer producing it due to from my understanding, financial reasons. UCSF used to produce their own drug but the key nuclear pharmacist had know retired and they are no longer able to make the drug. This particular drug/treatment did not work for me but is was helping many others throoughout the country. So, AstraZeneca is our hope for the cure.
We are, once again, overwhelmed with everyone's kindness. We are so grateful to the many people have stepped into our life since the diagnosis of the 'c.' Our neighbors are incredible, our friends, our family... we are so very appreciative and once again, when I am well, we will return the acts ten-fold. Thank you to all, especially the Ohe's, for making our birthdays so much fun!
Love to you today,
K.
Wednesday, March 7, 2007 8:29 AM CST
HAPPY BIRTHDAY BRETT & TIMMER!!!
We love you!
Kate & Grant
Tuesday, March 6, 2007 3:19 PM CST HAPPY BIRTHDAY BRETT & TIMMER!!!
We love you!
Kate & Grant
Sunday, March 4, 2007 12:04 AM CST Happy Birthday Josh S, Celine D, & Timmer!
As the "baby" of the family, I am often accused of being spoiled by my siblings. This is something I vehemently reject (hey, I am the youngest of 8, how spoiled could I be??!). Today however, I must admit that I am just that - SPOILED! Thank you for all of the love and attention received on my birthday! My Husband, Son, Mom, FAMILY and friends made this birthday a memorable one! My appreciation and love is indescribable.
With that, it is now BRETT'S turn to receive the lov'n! Brett will turn 36 on March 7th (Wed)! Happy Birthday B! He has such incredible strength, humor, intelligence, patience, and love - he is the love of my life. HAPPY BIRTHDAY TO BRETT!
Grant is digg'in all of the parties and attention as well. Cake has become a main staple in our diet these past few weeks. He woke up today with a fever of 102 so I figured, let him eat cake for breakfast too! The poor little man can't seem to shake this bug! We have been negligent in adjusting him this winter which will change immediately! Outside of the on/off flu, he is doing great and continues to shock us with his ability to understand the world around him. He doesn't miss a thing - which is both challenging for us and awe inspiring. The other day, he asked me "what is a Shiite Mosque?" He must have remembered the news report we had heard earlier that day. Just when I am convinced he is genius, he runs up to me and licks my cheek or trys to givve me "hickey" kisses on my neck...
My CBC blood counts are still on the low side but are creeping up a bit. We received an email from Switzerland telling us that they don't know why my counts haven't rebounded as of yet and that due to this issue, it may not be possible to receive another treatment. We will wait and see. In the meantime, they are thrilled about the tumor marker results! My next CT is around the 20th of March and we are actually looking forward to seeing the results!
Have a great week!
Kate
Friday, March 2, 2007 10:36 AM CST ***I rarely, if ever, read my horoscope but stubled upon it in the STrib. today..."The stars, the facts and the poplular opinion all point to the same thing: Everthing will be all right. So calm down and lighten up. Lovingly and tenderly assure yourself that all is well." How about that for a Bday horoscope! Thanks for the well wishes! Love to you! K.
Today is Kate's 35th Birthday. A more beautiful birthday girl I could not imagaine. I, being a year older and grayer than her, still have no words to describe how much I have enjoyed spending the last 10 or so Birthdays with this amazing woman. Here is to you Kate and to another 35 years of Birthdays together. I Love You, B
Saturday, February 24, 2007 8:33 PM CST This past month has been an incredible whirlwind as our rollercoaster continues careening along the track. The other day I found myself telling someone the details of these past few weeks. It wasn't until I recounted the events of the month that I realized how much has happened. I guess it is the gift and curse of life that these moments which make up our days, pass so quickly. A challenging moment of parenting is soon filled with joy and laughter. Exhaustion and discomfort is quickly replaced with exuberance and ease. Crankiness moves to, well, less crankiness... Most of the moments are bursting with love, gratitude, laughter, playfulness, hope and happiness - oh yes, let's not forget the many moments we spend traveling the planets and blasting off to Saturn.
Our prayers continue to be answered with promising results and (knock on wood) slightly better days. I tried to drag Brett out into the snowy street to dance with me tonight but he convinced me that the neighbors will REALLY think we are nuts (for those of you who have heard the bats story, you know that the neighbors already have valid concerns). We are so grateful to all of you who continue to keeps us in your thoughts and prayers. Thank you.
It was great to spend so much time with family these past weeks - again, the moments pass too quickly. We miss all of you already and hope to get to spend more time together soon. Max, Grant refuses to take off the jacket you gave to him! He sure digs his older cousins!
Our prayers go out to our extended family tonight.
Wishing you great love, K.
Thursday, February 15, 2007 6:09 PM CST This is Jen Konschak. I am at Kate's taking care of the family because Typhoid Mary (flu) has struck their household. Grant was in the ER on Monday because of dehydration and is still very sick! I have never seen him sit so still. Unforturately, Brett was also hit by the flu BUT, seems to be bouncing back more quickly. Clearly Mom's immune system has kicked in as she is still healthy despite low cell counts. Kate wants me to thank myself, Mindy, Sandy, David and Jeanne for taking care of them these past few days.
On to better news, Grant had a great birthday complete with a rocket ship cake and every astronaut toy sold in this galaxy. Kate will write more about it later. He had a frantastic day.
Even better news is that Kate's tumor marker came back the lowest it has ever been... 169!! It was at 1600 last spring (normal is 0-30). Amazing! As soon as they are able, they will be dancing in the streets.
It has been fun spending time with Kate and Grant even though he is sick. We hope that everyone is staying healthy! Jen and Kate
Tuesday, February 6, 2007 9:48 PM CST Brett & I sitting in bed eating "graham cracker mush" (it is a Moorhead thing...) so we thought we would give a quick update.
We are gearing up for Grant's epic birthday. I had hoped that two would come in like a lion and go out like a lamb. Instead, it came in like a lion, hibernated for a couple of months and is now going out like a lion. After a hectic day, I stepped out of Grant's room for two minutes and came back to find him COVERED in vaseline. Absolutely caked in it - smiling from ear to ear. Blood counts were down a little bit again, setting the stage for another rise again next time to avoid a dreaded bone marrow biopsy. More later , stay warm Kate WBC 2.0 Platelets 73 Hemoglobin 10 Neurtophils 1.0
Saturday, February 3, 2007 2:02 PM CST The media release from the MN Medical Assoc. (MMA) that I posted the other day is sparking quite a bit of conversation. I have received several emails from people who either support the insurance companies for imposing limits upon the expensive tests as well as from people who support the MMA and the belief that we should not allow third parties to interfere with decision making in health care. To be fair, the previous posted information came directly from the MMA website. I will post the article the Star Tribune article so that both sides can be better represented.
I do need to say that Medica has been nothing short of wonderful to me through this journey. They have approved payment on things that we never would have imagined and every customer service person I have worked with has been incredible.
Happy Birthday Espen & Missy!!
Love to you all. K.
PS - My counts went down a bit again. We are back to doing blood tests weekly and are in a wait and see mode. Much better than getting another bone marrow biopsy. I know, I am a wimp.
Here is the Star Trib. article:
*Doctors protest insurers' rules on approval for scans* > David Phelps , Star Tribune > > Minnesota doctors asked state insurers to immediately suspend > controversial new regulations that require an outside > evaluator to review all requests for high-tech diagnostic > scanning. > > In a letter obtained by the Star Tribune, the 11,000-member > Minnesota Medical Association (MMA) asserts that the new > third-party consultation places a burden on patients and > clinics alike and will "interfere with the patient-physician > relationship."Physicians throughout Minnesota, whether > practicing in urban or rural, primary care or specialty, large > or small group practices, along with health care leaders in > the community, agree this is the w! rong direction to take," > said the letter dated Wednesday and signed by MMA President G. > Richard Geier Jr., Chairman Michael Ainslie and Chief > Executive Robert Meiches. > > The letter does not say what steps the organization would take > if the health plans kept the review programs in operation, > which is likely since those contacted Wednesday said they had > no intention of changing their system. > > Medica implemented the requirement on Jan. 2. A similar > program at HealthPartners takes effect today, while Blue Cross > and Blue Shield of Minnesota will begin third-party reviews of > scanning requests in July. > > Insurers say they are doing this to reduce unnecessary or > wrongly prescribed CT scans, MRIs and PET scans. Medica > contends that 15 to 20 percent of the scans it pays for are > not appropriate for the condition being treated. > > Under Medica's process, physicians or their staff are required > to call a radiology consulting firm hired by Medica to explain > the! need for a specific diagnostic test. Using existing > clinical ! standard s, the consultant approves the request or > recommends another test. > > Tests not processed through the review process will not be > reimbursed by the insurer beginning in March. > > In its letter, the MMA said it agrees with the health plans > that the use of costly high-tech imaging is growing > dramatically. But it said all parties must understand the > reason for the growth. > > "Diagnosis of the problem must precede the solution," the > letter said. "We believe physicians have a professional and > ethical obligation to take a leadership role in understanding > and addressing this issue." > > But Dr. Charles Fazio, Medica's chief medical officer, said > doctors who participated in a six-month pilot project with the > review system are comfortable with the procedure. > > "This is not the burden some would have us believe it to be," > Fazio said. "We've admitted all along that this is not a > perfect solution and it is not a long-term solution." > > Fazio said the i! maging consultant is receiving 150 to 200 > requests a day for test approvals. Of these, 13 percent are > denied or diverted to another test such as an X-ray, which is > cheaper. On an annual basis, Fazio said, that is a saving of > $10 million. > > Medica will evaluate the performance of the program after six > months, he said. > > Fazio and Dr. Pat Courneya, associate medical director for > HealthPartners, said insurers and providers are working with > the Institute for Clinical Systems to build testing guidelines > into electronic medical records. In that way, a doctor would > know the appropriate test as patient information was entered > into the record. Some providers already have that ability, > including those in the HealthPartners group. > > Fazio said Medica probably will exempt doctors from the review > process if they have electronic medical records with > diagnostic capabilities. > > In its letter, the MMA also endorsed the establishment of > medical guidelines that can! be used to make decisions on > diagnostic tests without third-p! arty inv olvement. > > David Phelps • 612-673-7269 • dphelps@startribune.com > >
Saturday, February 3, 2007 2:02 PM CST The media release from the MN Medical Assoc. (MMA) that I posted the other day is sparking quite a bit of conversation. I have received several emails from people who either support the insurance companies for imposing limits upon the expensive tests as well as from people who support the MMA and the belief that we should not allow third parties to interfere with decision making in health care. To be fair, the previous posted information came directly from the MMA website. I will post the article the Star Tribune article so that both sides can be better represented.
I do believe that the cost of expensive imaging is getting out of hand. From what I understand, some physician offices now have their own radiology/scanning equipment and a conflict of interest could exist. However, I still maintain that involving a third party in health care is an expensive and inefficient endevor. I question if a CT scan would have been approved for me once a physician finally recommended one. I have needed so many types of scans - CTs, MRIs, PETs, 131MIBGs, Octreotide.... I doubt that this new rule imposed by insurance companies will change my health care in any way but I am guessing that it will take up a great amount of time from a staff person at my oncologist's office. In turn, this will cost my oncologist office money which in turn, this will cost my insurance company money which in turn, this will cost me money??
There are a couple of you who are MUCH more knowledgeable in the subject than I -- Please feel free to share your thoughts and ideas.
Love to you all. K.
PS - My counts went down a bit again. We are back to doing blood tests weekly and are in a wait and see mode. Much better than getting another bone marrow biopsy. I know, I am a wimp.
Here is the Star Trib. article:
*Doctors protest insurers' rules on approval for scans* > David Phelps , Star Tribune > > Minnesota doctors asked state insurers to immediately suspend > controversial new regulations that require an outside > evaluator to review all requests for high-tech diagnostic > scanning. > > In a letter obtained by the Star Tribune, the 11,000-member > Minnesota Medical Association (MMA) asserts that the new > third-party consultation places a burden on patients and > clinics alike and will "interfere with the patient-physician > relationship."Physicians throughout Minnesota, whether > practicing in urban or rural, primary care or specialty, large > or small group practices, along with health care leaders in > the community, agree this is the w! rong direction to take," > said the letter dated Wednesday and signed by MMA President G. > Richard Geier Jr., Chairman Michael Ainslie and Chief > Executive Robert Meiches. > > The letter does not say what steps the organization would take > if the health plans kept the review programs in operation, > which is likely since those contacted Wednesday said they had > no intention of changing their system. > > Medica implemented the requirement on Jan. 2. A similar > program at HealthPartners takes effect today, while Blue Cross > and Blue Shield of Minnesota will begin third-party reviews of > scanning requests in July. > > Insurers say they are doing this to reduce unnecessary or > wrongly prescribed CT scans, MRIs and PET scans. Medica > contends that 15 to 20 percent of the scans it pays for are > not appropriate for the condition being treated. > > Under Medica's process, physicians or their staff are required > to call a radiology consulting firm hired by Medica to explain > the! need for a specific diagnostic test. Using existing > clinical ! standard s, the consultant approves the request or > recommends another test. > > Tests not processed through the review process will not be > reimbursed by the insurer beginning in March. > > In its letter, the MMA said it agrees with the health plans > that the use of costly high-tech imaging is growing > dramatically. But it said all parties must understand the > reason for the growth. > > "Diagnosis of the problem must precede the solution," the > letter said. "We believe physicians have a professional and > ethical obligation to take a leadership role in understanding > and addressing this issue." > > But Dr. Charles Fazio, Medica's chief medical officer, said > doctors who participated in a six-month pilot project with the > review system are comfortable with the procedure. > > "This is not the burden some would have us believe it to be," > Fazio said. "We've admitted all along that this is not a > perfect solution and it is not a long-term solution." > > Fazio said the i! maging consultant is receiving 150 to 200 > requests a day for test approvals. Of these, 13 percent are > denied or diverted to another test such as an X-ray, which is > cheaper. On an annual basis, Fazio said, that is a saving of > $10 million. > > Medica will evaluate the performance of the program after six > months, he said. > > Fazio and Dr. Pat Courneya, associate medical director for > HealthPartners, said insurers and providers are working with > the Institute for Clinical Systems to build testing guidelines > into electronic medical records. In that way, a doctor would > know the appropriate test as patient information was entered > into the record. Some providers already have that ability, > including those in the HealthPartners group. > > Fazio said Medica probably will exempt doctors from the review > process if they have electronic medical records with > diagnostic capabilities. > > In its letter, the MMA also endorsed the establishment of > medical guidelines that can! be used to make decisions on > diagnostic tests without third-p! arty inv olvement. > > David Phelps • 612-673-7269 • dphelps@startribune.com > >
Thursday, February 1, 2007 10:28 AM CST PLEASE READ:
You most likely know that I sought medical care for over 5 years. I visited doctors, urgent care centers and not one of them, until Dr. Engebretson ordered at CT or any other major scan. It appears that insurance companies are now going to require that doctors get prior approval for important medical tests. I can almost guarantee that I would not have been approved due to my age and "lack of symptoms" as I was told in previous visits. I ask that you read the following release from the MN Medical Association and if you agree with them, contact them, write a letter to your local editor or contact your legislator. Kate
Media Releases
For Immediate Release January 31, 2007
MMA CALLS ON HEALTH PLANS TO STOP HIGH TECH IMAGING ‘CONSULTATIONS’
MINNEAPOLIS - The Minnesota Medical Association (MMA), a professional association representing 11,000 physicians throughout the state, is calling for an end to new requirements that physicians “consult” with a third party vendor before ordering high-tech imaging procedures, such as CT, MRI, and PET scans. Medica recently introduced a “consultation process,” HealthPartners will roll out a similar program on February 1st, and Blue Cross, UCare, Metropolitan Health Care, and PreferredOne intend to follow suit later this year. The Department of Human Services plans to go further and roll out a prior authorization procedure in response to a 2005 legislative mandate.
The MMA asked Medica to withdraw its program, which has provoked outrage among physicians, and asked the other third-party payers to drop their plans and work with the MMA to understand the issue and address any problems that might exist.
“We know that the use of high-tech imaging is increasing and it’s important to find out why,” said G. Richard Geier, M.D., president of the MMA. “If there are problems, we want to address them. But diagnosis of a problem should come before a solution. This is the wrong response.”
Demanding “consultations” for all imaging procedures is a waste of energy, time, and money, MMA leaders told the health plans. It puts an administrative burden on clinics, increases health care costs and adds to the time patients must wait for an imaging procedure.
“All Minnesota patients deserve the right scan at the right time, based on their medical needs and circumstances,” said Geier. “There shouldn’t be overuse or underuse of imaging procedures.”
In letters to health plans and DHS the MMA recommended that:
There be a community-wide effort to collect information that will result in a clear understanding of high-tech imaging use throughout Minnesota. Data be used to develop solutions that will address any inappropriate use of high-tech imaging. Health care providers rapidly move towards implementing evidence-based decision tools. “We hope to work in collaboration with the Institute for Clinical Systems Improvement (ICSI) and other major stakeholders, including the health plans and DHS,” said Geier.
-30-
Contact:
Lorrie Holmgren 612/362-3742 Scott Smith 612/362-3726
Minnesota Medical Association 1300 Godward St. NE, Suite 2500 Minneapolis, MN 55413-1878 Phone: (612) 378-1875 Fax: (612) 378-3875 "Physicians Working for a Healthy Minnesota"
Thursday, January 25, 2007 11:16 AM CST ** Thank you for the notes of sympathy. We will try to update this site tonight. We have posted photos from Mary & David's wedding which can be found under 'view photos' above. Love to you -- Kate **
Brett's step mom, Mary Jahoda Mortenson, passed away early yesterday morning at her daughters home in Duluth. Mary was a beautiful and vivacious person - she and David were like teenagers in love. Information of services can be found at Korsmo Funeral Home and in her obituary which will be in the Fargo Forum tomorrow. We invite those of you who knew Mary to attend a prayer service tomorrow night (Friday) at Korsmo Funeral Home, 7pm (we invite you to all services). The family would cherish any stories or memories that you would be willing to share.
Saturday, January 20, 2007 3:21 PM CST WBC: 1.9 Hemoglobin: 10.1 Platelets: 68
Sorry for the lack of updates. Between strep throat (Grant), runny noses, doctor appointments and a journey to Duluth it just hasn't happened.
Brett's Dad & Step Mom are back from AZ snd staying at her daughter's in Duluth. Mindy invited Grant over for a slumber party with her girls so that Brett & I could spend the night with them. We were really glad that we were able to see Mary and spend time with David. Please continue to keep them in your hearts and prayers.
Grant is anticipating his birthday already!!! He tells everyone he meets that he will be three on Feb 9th, holding up nine fingers to insure that they understand. He is convinced that he is an astronaut and we spend most of our afternoons traveling to Saturn and blasting off.
We have already heard from Norm Coleman's office and are impressed with the level of concern and expediency. AstraZeneca should be contacting me to discuss the drug on Monday. I have no idea if anything has changed but we are grateful for the opportunity to talk with the decision makers directly.
My counts continue to stay low -- low enough that it has been recommended that I do another bone marrow test. Not thrilled about this one.
Thank you to everyone who has / continues to help us in our day to day tasks. It allows me to spend my energy on what matters the most - Grant & Brett. I tire far too easily and I can't imagine how we would manage without you. Thank you.
I wish you a glorious week. Love to you. Kate
Wednesday, January 10, 2007 9:23 PM CST Sorry about not updating as much recently. Things have been pretty wild around here lately. We had another CT scan Tuesday and we would be lying if we said that we weren't a little nervous- Kate had been hurting a little more again lately. We were psyched to find out that for the third scan in a row there was some "shrinkage" of the little bastards. We are excited to see continued positive objective findings and look forward to when the subjective experience improves equally. In the meantime we continue to look for the next battle front. This has included Kate writing a letter to her friend Norm Coleman looking for help in getting compassionate use programs for drugs that are being studied for similar diseases but are not yet available to those who have no other options. Kate is considering rethinking her straight ticket voting practices if he can come through. We shall see. More to come. Brett WBC: 2.6 (norm: 4.5 - 10) Plateletts: 99 (norm: 140-400) Hemoglobin: 10.2 (norm:12 - 17)
Saturday, December 30, 2006 3:09 PM CST Wow, how time flies. Our apologies to all for the long delay between updates. Kate continues to enjoy positive medical test results, but, unfortunately her body hasn't seemed to read them. She has a fair amount of pain in her side and back for a yet unknown reason. Her energy level is a bit low as well. (Thus the delay in updates!)
Christmas with Grant was a joy. Santa stopped by on Christmas Eve to check out the chimney and remind Grant to put the fire out before he went to bed. Grant immediately jumped in his arms and asked him if he really lived at the North Pole. The Mortenson's and Hunt's created quite the mob scene throughout Christmas weekend.
Brett asked Grant what the real meaning of Christmas was and he said "family". He was prompted with "what else" and stated it was Jesus' birthday, candles and Christmas trees. Brett asked "what else" and pointed to his own heart to prompt him. Grant said, "your shirt!" Close enough.
Hope yours was as full of family and love as ours was...
Happy New Year to all,
Maria
P.S. Please keep Brett's stepmom, Mary, in your prayers as she continues on her journey with her cancer.
***Kate here. Thanks for writing Maria. Great minds tend to think alike... I will just add another request for your well wishes and prayers to both Mary and Michelle (who is also fighting paraganglioma and is not well at the moment). We love you Mary & David! Safe travels home.
Is anyone interested in spending a week in SUNNY Vero Beach, FL this January? Friends & I bought a week stay right on the beach for $700 from a silent auction. Unfortunately, '06 did not allow for that type of travel. The condo. has two bedrooms, kitchen etc.. and is on the beach. If you can travel on short notice, let us know - it's yours!
Brett, Grant & I wish you a happy and healthy new year! Love to you. K.
Wednesday, December 13, 2006 12:17 AM CST ***We just received the latest and literally greatest tumor marker thus far. 245!!! Normal is still between 0 - 30 but it is a far cry from the marker last spring which was 1600!!! Now, we just need to find our next step. I spent around 6 hours emailing and calling different doc's yesterday. Nearly everyone has replied already! The long and short is that we still haven't found our next step but even the Mayo expert thinks there should be something solid within 3 to 5 years. I tried to get into a different study at Mayo but Astra Zeneca's rules are too stringent and so we are foiled again... The right answer will come. It always does... Bjorn is having surgery as I type this note so please keep him in your thoughts.***
Well Within Holiday Open House & Special Presentations
Free & Open to the Public (bring friends) When: Thursday, December 14th; 5:30pm - 7:00pm Where: Well Within 1880 Livingston Ave, Suite 103, West St Paul RSVP: Call Well Within at 651-451-3113 or e-mail: wellwithin@qwest.net Refreshments & Demonstrations:Qigong, Reiki, Healing Touch and Healing through Creative Expression, Renewing Life® and other class offerings. Drawing for an autographed copy of Thin Places or a Well Within gift certificate for a free class or healing energy session.***
*** Happy Holidays everyone! Thank you as always for the well wishes. They do mean the world to us and we are grateful to all of you who keep us in your thoughts.
We were greatly relieved to find out that the "c" hasn't further spread into my bones. I have had the one lesion in my spine since last summer but there is no new growth in the bone. Hooray! I am VERY happy about these results and can deal with the other stuff all day long in comparison... This is what the radiologist said: 1. Extensive anterior paraspinal (paraaorta) soft tissue masses consistent with known disease. 2. Metastatic lesion in L2 vertebral body (we already knew this) 3. Questionable nerve root impingement... No new news is good news in our case!
Grant is enjoying the season to the fullest! He is a gregarious little boy and it has been nothing short of awesome to watch his face as we decorated the tree, went to the Holidazzle Parade and visited Santa. He continues to fill our house with energy and joy! As I was putting Grant to bed last night (yes, I have been staying in his room until he falls asleep lately...) he started giggling ever so softly. I ignored him but he continued to smile and giggle to himself about once a minute. I finally asked what he was smiling about. With his eyes still closed and in a sleepy little voice he said, "I just love you" and giggled again. Just when I thought he was sleeping, I opened my eyes and he was staring at me, beaming. I asked him what he was doing and he sweetly told me that he "was just looking at me". What a charmer. His nephews have taught him well!
Brett continues to balance our life like that of a trapeze artist. With the exception of going a bit overboard on protecting me from getting overly tired, he tries to keep our lives as normal as possible. Brett had hoped that his rough housing with Grant would get him into shape for football Thursday nights but he still pays the price each Friday morning. Brett's wonderful flexible schedule will soon come to an end as he will return to working full days on Wednesdays.
Lastly, we received confirmation that we will not get into Duke or any other trial for Astra Zeneca's ZD6474 (Zactima) drug. It is a long story but the skinny is that because it is an "orphan drug," the Compassionate Usage Program doesn't exist. Our best estimate is that it will receive FDA approval in mid '08. Thank you to Hank Blissenbach and to Steph Munyon for all of your assistance!
We continue to be humbled by everyone's care and concern. We are buoyed by your energy and love.
There are so many people to keep in our hearts during this holiday season...today I ask that you keep Bjorn Bennes in your hearts, thoughts and prayers as he gets ready for surgery tomorrow. http://www.caringbridge.org/visit/bjornbennes Bjorn is Julie & Chris Bennes's son (Salvevold). I also ask that you keep Michelle M.'s daughter who is battling luekemia in your thoughts and prayers over the next couple of days.
Much love to all of you! Enjoy the magic of the season!!
K.
Monday, December 11, 2006 10:02 AM CST Kate received her MRI report this morning, and it showed no further cancer of the spine. On the other hand it did not explain the pain in her side and back. The CT scan didn't answer that question either. So while we cheer over both scans, the mystery remains. She will be trying a new neurological pain pill which has been very positive for many people. We're counting on that to make her more comfortable.
Last week's blood tests show everything going up, oh so slowly, but going up never the less. The only exception to that was a very slight decrease in her white cells. Right now she is battling a cold and ear infection, but they are not stopping her from decorating her house and wrapping presents.
Happy Holidays to all of you. Thank you for being such a wonderful support system for Kate, Brett, and Grant. You will never know how much you have meant to all of us. Jeanne (Kate's Mom)
For those who knew Jenny, please visit http://www.caringbridge.org/visit/jennypeterson to share a memory or story.
Friday, December 8, 2006 5:26 PM CST Still no news. We should get the results Monday. We are looking for a compressed nerve in my spine or hip. Of course, we have other paranoias about what it may be but the plan is that it will be a nerve thing. As of today, Duke has not returned any calls.
Brett & I are looking forward to our date tonight. Grant is excited to watch Rudolph The Red Nose Reindeer on TV with his friend Raven.
We wish you all a wonderful weekend! Peace, Kate
Thursday, December 7, 2006 7:57 AM CST ***Nothing yet...The tech said that my doctor would have the info. today but I am guessing that they had to chase down a prior scan for comparison. It isn't unheard of that my doc calls after 9pm so maybe we will still hear something tonight. Until then, Happy 50th Tori! Happy Bday Mindy! Happy Bday Shannon! ***
Kate is having an MRI this morning in hopes of pinpointing the exact reason behind the pain she's had. We will update later today or tomorrow morning. We hope to have some info. regarding Duke by then as well.
***To those who know Jenny...Please visit Jenny's Caringbridge site and share a story or memory. Jenny's family would love to hear from you. http://www.caringbridge.org/visit/jennypeterson
Wednesday, November 29, 2006 4:26 PM CST Hey Everyone,
It is time for an update. Sorry to those who are diligently checking the site.
Kate's next CT scan is scheduled for the first week in January. Hopefully the joy that comes with the holiday season will kill the evil "C" that is still clinging on to Kate's body. As of right now, the CBC (blood) levels are still low. As always, everyone who has brought or is still bringing meals are amazing. Kate, Brett, and Grant can't express in words how much those simple (or extravagent) meals mean to them!!!
As for Thanksgiving, the Hunt-Mortenson trio united with Brett's family up in Moorhead to stuff their faces with turkey, stuffing, mashed potatoes, the works. They then headed back down to Nisswa to celebrate Torii's 28th ;) birthday with the Hunt family. Those Europeans sure age well!
Personally, I was home for Thanksgiving for the first time since August and had a blast. Grant gave me the biggest hug I have ever received when I saw first saw him. He is quite the chatterbox and is probably the sweetest and smartest child ever(next to me of course). Brett and I had a great talk one night after I was done babysitting Grant. He continues to amaze me with all he does. Kate looks fabulous, as a 24 year old should (Can you tell that the females in my life have trained me well with ages?), but we need to work on getting her energy up.
So keep the love coming and lets kick this thing's ass!! You are all an amazing support group!!
Lots of Love from Boston,
Conor O'Phelan, Kate's nephew
Friday, November 17, 2006 8:53 PM CST
We just finished watching the movie Cars with Grant. We let him stay up late and eat cookies and popcorn in our bed. Half way through the movie, Grant grabbed Brett & me around the neck and said, "Mom and Dad, you make my heart sing really, really happy and strong." Life just doesn't get any better than that.
We finally received the tumor marker test results. I would ask for a drum roll but that would be far too dramatic for less than dramatic results. It went FROM 285 last month to 275 today. Not statistically significant but we are still giving a sigh of relief. The last time that it took so long to receive the result, the marker had jumped 800+ points. So, we'll take it --- at least for today. We are hoping for 30 next month!
The last three days have been quite good. I am hoping that the reprieve will continue for the next 60 years. My ANC (whites) is 1.3, Hemoglobin is 9.2 and platelets are at 90 (I don't remember the red count but it is also approx. the same as it has been the last couple of months). I asked Brett if he remembered the days when we spoke of red and whites in terms of wine....
Thank you for all of the love and energy. We seem to need the booster this week.
Much love to you. I wish you all someone who makes your heart sing happy!
K
Friday, November 17, 2006 8:53 PM CST
We just finished watching the movie Cars with Grant. We let him stay up late and eat cookies and popcorn in our bed. Half way through the movie, Grant grabbed Brett & me around the neck and said, "Mom and Dad, you make my heart sing really, really happy and strong." Life just doesn't get any better than that.
We finally received the tumor marker test results. I would ask for a drum roll but that would be far too dramatic for less than dramatic results. It went FROM 285 last month to 275 today. Not statistically significant but we are still giving a sigh of relief. The last time that it took so long to receive the result, the marker had jumped 800+ points. So, we'll take it --- at least for today. We are hoping for 30 next month!
The last three days have been quite good. I am hoping that the reprieve will continue for the next 60 years. My ANC (whites) is 1.3, Hemoglobin is 9.2 and platelets are at 90 (I don't remember the red count but it is also approx. the same as it has been the last couple of months). I asked Brett if he remembered the days when we spoke of red and whites in terms of wine....
Thank you for all of the love and energy. We seem to need the booster this week.
Much love to you. I wish you all someone who makes your heart sing happy!
K
Tuesday, November 14, 2006 9:31 PM CST CBC counts are still low. We hope to get the tumor marker results back tomorrow. Dr. Schwerkoske (MOHPA) is contacting Duke to take another run at getting into the AstraZeneca study. We'll try to update more tomorrow.
Much love to each of you, K.
Tuesday, November 7, 2006 5:49 PM CST *Two tumors are slightly smaller. All others remained stable. I am greedy..."
We fell off the planet for a while. How did we survive without this "internet fad". Our service has been down and we still havn't straightened it out yet. SO, We had a CT scan today and it showed some shrinkage again but mostly stable disease (no growth). Typically, we would be rejoicing but now we are getting greedy. Anything but complete tumor destruction isn't quite good enough. I am trying to convince Kate that a being disappionted by only a moderate amount of tumor death is a million times better than justifying continued tumor growth- which was our previous pastime after our earlier scans. Kate's blood counts are still quite low and she is having a little more discomfort lately but hopefully these scans and a DFL sweep tonight will have her feeling better (she is going to be so pissed at me, she had been holding her tongue on this site for this whole election and the first chance I get...) More when we are back up Brett
Thursday, October 26, 2006 9:25 PM CDT Happy Birthday Dan & Paul!
Grant's second day at Mt. Olivet went well. Grant enjoyed day one as well but we aren't too sure that his teachers could say the same. Teacher: "Does Grant struggle with authority at times?" Hmmm...I wonder where he gets that?
Another week in the holding pattern. Blood cells stil low, CT scan in two weeks. Thanks to all of you for the one billionth time for all of the gestures of help. It definitely makes the madness more manageable. Kate is eager for her marrow to start kicking out those cells again so she can get back to chasing our little monkey. More to come Brett
Thursday, October 26, 2006 9:18 PM CDT
Monday, October 23, 2006 9:10 AM CDT I received this email from a friend of Gerry's, GW. I know that many of you have been praying for Gerry and often ask how he is doing. Please continue to keep Andrea, Cassy, Kyle and Terrance close to your heart and in your prayers. If anyone would like to contribute to a memorial for the family, please let me know.
Dear Kate... I was asked to inform you that Gerry is finally free of the pain that tormented him. He is with the Lord! He passed away on Wednesday and went peacefully. The family is well...and has chosen to celebrate life. Andrea wanted to contact you herself but will do it after this busy time is over. Feel free to contact the family at any time you wish. Thanks for your prayers and concern.
Thursday, October 19, 2006 8:50 PM CDT HAPPY BIRTHDAY MARIA & SHANNON!!! HAVE A GREAT DAY!
Wow, another whirl-wind week, most of which was good.
Brett, Grant & I spent a long weekend in AZ to celebrate the marriage of Brett's brother, Nate. It was a wonderful family event and we are so thrilled for Heather and Nate to begin this new chapter in their lives. Grant was a joy nearly every moment of the trip - with the exception of course, the wedding! At least he made it down the isle...
Grant began "school" yesterday (daycare at Mt. Olivet). We are slowing acclimating him so he spent just an hour yesterday and spent the entire morning today. When Brett arrived to pick him up he cried and told the teacher that he didn't want to go home yet. And to think that I was a nervous wreck that he wouldn't want to go, he would hate it, he couldn't survive without me at his side every second...
285 --- The tumors must be gasping for their last breathes of air. It is funny how this knowledge makes my discomfort so much more tolerable! We are elated about this news and are actually looking forward to the CT scan on Nov 7th (Election day -- Go Klobachar & Wetterling!)
It was my Dad's birthday yesterday and I miss him immensely. Before I realized that it was the 18th, I found myself pulling out a book of memorabilia that we had compiled after his death. I didn't consciously recognize that it was his birthday until we were half way through the book. If my brother will give me permission, I would like to post a story he wrote about my dad and his love for our family.
Kelsey, my niece, arrived safe & sound in S. Korea. She is volunteering at an orphanage for children with mental and behavioral challenges. She is such a cool young woman!
Maria is turning FIFTY tomorrow! We hope to get her liquored up and get her to sing some Rod Stewart on karaoke...
I struggle to find the words of gratitude that we feel toward the people who continue to support us as we fight back the "c". We are so fortunate to be surrounded by such incredible and loving individuals. Thank you also the “chosen” that allow me to vent and listen as the "wolf" takes over my heart. It doesn't happen often, but when it does, it can be ugly. Thanks for letting it roll and not holding me to my angry moments...
Please continue to keep Gerry W. and his family in your prayers and hearts. Also, please keep Dan Arom (SJU) and family in your thoughts and prayers as they try to adjust to their lives after losing his brother, Mach.
Love to you,
K, B & G
Tuesday, October 17, 2006 10:51 PM CDT
We will give a better update tomorrow but for now know that your well wishes are working! My tumor marker went from 1600 in June to 285 today (thanks for the clarification LeAnn - if you were going to be dyslexic, I am glad that the correct number was the better one)!
We will give more details about health, Nate & Heather's wedding, Grant etc... tomorrow.
Last week was not a good one for subjective symptoms so it is with great relief that we are receiving positive objective results!
K.
Wednesday, October 11, 2006 4:18 PM CDT Kate's about to take another positive step on this journey...being alone with Grant! She and Grant are looking forward to the time they will get to spend together from the time he gets home from "school" and when Brett gets home. It's a big step...which is where some of you might help. As Kate adjusts, she could still use help with meals. The transition will be easier if taking care of a 2 year old is all (!!?!) she needs to deal with those afternoons. Many gracious friends have been providing meals so that three days a week or so she has had help. Some have had to drop out of the rotation due to their own family needs. If you are interested in joining the rotation, please let Jen Konschak at jenkonschak@hotmail.com know. It usually ends up being about once every 6 weeks.
As always, we thank you for your friendship and constant support.
Maria
*** Please send positive energy and prayers to Gerry, "GW". This is very important to me. Gerry is the person from the original study regarding treatment options for paraganglioma. I met GW and his family on the morning that I was checking into the hospital. He inspired me to hope and believe that I too, could be well. He had such an incredible attitude which resulted in my feeling much more calm about the MIBG therapy. He and his family have fought hard for his healthcare - his wife even threatened to chain herself to a tree to get their insurance to pay for the MIBG treatment. Their family has done so much for everyone fighting paraganglioma. They are kind, wonderful and giving people. Please pray for comfort and wellness for Gerry, Andrea and his three children. ***
Wednesday, October 4, 2006 8:24 PM CDT *** Please send positive energy and prayers to Gerry, "GW". This is very important to me. Gerry is the person from the original study regarding treatment options for paraganglioma. I met GW and his family on the morning that I was checking into the hospital. He inspired me to hope and believe that I too, could be well. He had such an incredible attitude which resulted in my feeling much more calm about the MIBG therapy. He and his family have fought hard for his healthcare - his wife even threatened to chain herself to a tree to get their insurance to pay for the MIBG treatment. Their family has done so much for everyone fighting paraganglioma. They are kind, wonderful and giving people. Please pray for comfort and wellness for Gerry, Andrea and his three children. ***
PBS (ch 2 & 17) will broadcast a four part series that will focus on the health care and patient care issues that we face in America. According to the PBS website, the goal of “Remaking American Medicine,” is to inspire, empower and educate, not assign blame for the problems that burden our health care system. If you are able to watch, I encourage you to do so. I have shared that if there is any one thing to be learned from my journey, it is that every person must learn to listen to their body and be your own best advocate when seeking medical care. I sought the opinion of medical doctors on numerous occasions (5x within 9mths at Aspen Medical alone) and I am angry that not one took me seriously enough to thoroughly check out my symptoms. But, in the end, I am the one to blame. I did not listen to my body and I did not firmly advocate for myself. I have now met far too many people who are in the battle for their life and nearly everyone’s story is the same; “I sought care for ____ months” or “I saw countless doctors” before the cancer was discovered. We ALL need to be our own best advocates, know our bodies and seek out doctors that you feel will be your partner in your health care. I don’t know the magic line between acting as a strong advocate for yourself and acting like a hypochondriac but I am hoping that this series will help. When in doubt, be the hypochondriac. Who cares what other people think, who cares if you have to take a couple of tests. I wish I had been one.
Please watch Oct 26th’s program entitled, “Hand in Hand”.
The four part series will play each Thursday night in October at 9pm (ch 17) and noon on Sundays on channel 2. Please be sure to watch the fourth series which will focus on the importance of being your own best advocate. The four series are titled as follows: *The Silent Killer - Preventable medical errors (which kill more pp in US than AIDS, breast cancer, automobile accidents each year) *First Do No Harm – Hospital acquired disease etc. *The Stealth Epidemic – Chronic diseases such as diabetes *Hand In Hand (October 26th)- How to be your own best advocate, partnering with your doctors
May this week hold many blessings for you. K. PS from Maria: Twin Cites Public Television (Channels 2 and 17) is also producing a local program, "Remaking Minnesota Medicine." Scheduled to air on Sunday, October 8 at 8 p.m. on Channel 17, this program will examine innovations and initiatives throughout Minnesota.
Saturday, September 30, 2006 8:46 AM CDT My counts are back!. I can now peel a carrot without bleeding to death (platelets at 90), I can be exposed to a germ without getting typhoid (white cells at 2.6) and can stand without leaning on a wall to hold me up(hematocrit 25 ?? and hemoglobin at 10). So, now that I am getting better, I woke with Brett's cough stuffy nose. How about that for timing. I think Brett felt more crummy than I but in typical fashion, continued to be my caregiver. After we beat the "c", I am sure that I will be fanning him with palm leaves and feeding him grapes until we are well into our 90's.
Grace Cebulla turned 3 last week and we spent a wonderful morning celebrating. I will try to post some photos when I get more time. Steph Gess had a healthy baby girl last week (by the way, it seems to me that you instigated the whole poison ivy thing...Bex is a chicken!). Happy Bday to Ohster and Troy B. Happy FIRST birthday to Baby Ana, who will now just be Ana.
Brett & I continue to be awestruck by the love that surrounds us. Thank you.
K.
Tuesday, September 26, 2006 10:36 PM CDT Sorry for lack of updates. Today was week #6 since last our last treatment-to the day, which is supposed to be the low point for Kate's cell counts. And lo how low they are. They are not to the point that her nurses need to intervene, but they are leaving her feeling pretty wiped out. It is a strange form of lotto that patients play after treatment. Anyone who has had the misfortune of playing this game can relate. They draw your blood and than if you sit and wait for the results. Staring at the fax machine. Kate and her nurses even make bets while they wait for the results to come back. Hopefully, this will be the low point and we will start to go up from here. If we owe you a call back or email we apologize and hope to have a full strength Kate back soon. I asked her last night how bad she was feeling and she said that she was tired but at least she was not tired and in pain. Again a strange form of victory but one that we will take for now and hope for even better later. Thanks for checking in.
Saturday, September 16, 2006 3:48 PM CDT Thank you for all of your prayers and well wishes. Brett & I truly believe that it has made all of the difference, both physically and emotionally. We are so fortunate to be surrounded by such nurturing and loving people - our family, our friends, our acquaintances - our life is very rich. Thank you.
Many people have asked us these questions this past week: 1. What's up with the breathing/talking problem? We don't really know. We did ANOTHER CT scan on Wednesday out of concern that the shortness of breath may be due to a pulmonary embolism. Thankfully, that was not the case. It is our hope that the tumor in my esophagus is irritated as it takes it's last breath and that it is to blame for the talking/breathing/dizziness thing.
2. We thought that your tumors shrunk last fall, after receiving the radiation treatment in San Francisco? No, although that is what we were initially told last November. The scan used to make that assesment was a MIBG scan. The MIBG scan only measures the uptake of the radiation - since there was little uptake, it looked as though the tumors were disappearing. After a CT scan later that November, we were faced with the fact that the tumors were in fact still growing. We tried to rationalize why this might be happening and convince ourselves that the tumors were just slow to react. As Brett said in the previous post, our CT results have never been good and until now, the "c" continued to grow with each month that passed. NOT anymore! We have the "c" on the run!
3. What's next as far as treatment goes? We are in a "wait and see" mode. As long as these suckers continue to shrink, we will just wait. I would like them to disappear all together but we would also take a "major shrinkage" and hope that they get small enough that the surgical risks wouldn't be as great. So, for now it is our mission to continue to shrink the little miserable, sorry for an excuse cells down to dust!
4. What happened to the "miracle drug" at Duke U? We are still hoping that AstraZeneca & Duke will change their minds and allow people w/similar tumors to take this drug through a "Compassionate Use" program. Thus far, they have denied all patients with Paraganglioma. From what I am being told, some patients don't have any other options available... (I have heard this one before also but at each wall, a door has opened). I am trying to get in touch with other patients and we will try to pressure AstraZeneca to offer a "CU" program for this drug (we received encouragement to do some from a world renowned expert on Paraganglioma).
5. How is Grant? Awesome! We have officially signed him up to start at Mount Olivet on Mondays, Weds., & Fri's. We haven't decided upon a start date as of today as we want Sarah to have plenty of time for her job search. I will take care of Grant BY MYSELF each afternoon and I am really looking forward it! Thank you to those of you who sent recommendations...it really helped. We narrowed it down to Step By Step Montessori and Mt. Olivet - they both seem to be great options but Mt. Olivet works out best for our situation.
6. How is Kate feeling? How is Brett holding up? Very well! I still struggle w/exhaustion which will hopefully improve after my blood counts return to normal levels. The difficulty w/breathing and talking comes and goes depending on the moment. Brett continues to be my strength and cheerleader. I don’t know how he does it… Our spirits are HIGH and we the pain is LOW so we are doing great!
Thank you again for all of your positive energy and prayers. So many generous and caring people continue to help us with childcare, meals, play dates, flowers, cards, phone calls, help around the house & yard, notes, positive energy and nightly prayers...we are so grateful to all of you and would be a wreck without you. Thank you.
Love and blessings to you.
K.
Saturday, September 9, 2006 12:22 AM CDT ***Taken directly from the Radiology Report from Kate's CT scan: 1. Two small nodes at base of neck are stable. 2. The remainser of the periesophogeal, abdominal and pelvic tumors have decreased in size. 3. Small tumor on L2 vertebrae has increased slightly but has become more sclerotic.
Best of all, both tumors by her aorta have decreased (from 7.7 x 7.5 to 6.4 x 6.3 on left and from 7.7x6.1 to6.0x5.2 on the right side)!!!!! TUMOR NECROSIS!!!!!!
***
The streak has been broken! Several actually. We were very anxious about this CT scan. There was no real reason to be, but we had become accustomed to the idea that things were going pretty well and that we were going to have a long wait between now and our next scan. We were actually welcoming the wait because most of our news had been lousy prior to our most recent treatments and we liked the thought of assuming things were good and just living our lives as "normal" as possible. We are learning however, that our new normal is going to be filled with lots of abnormality. So when Kate started having some dizziness and shortness of breath they called us in for yet another round of scans. A little history about some of our current streaks. No scan has ever really come back positive. We had become masters of rationalizing why each scan looked progressively worse, but that was beginning to get harder and harder. We have never had good news on some family members birthday- initial diagnosis, Mayo writing us off, surgery being cancelled...- all on someone's birthday. It was Kate's aunt Mary's 80th yesterday. Getting a call from your doctor immediately after your scan has not proven to be good news either. Kate was especially anxious about this scan, to the point that she wanted to call it off completely. And why not, she had been feeling better and generally hopeful that our treatments in Switzerland were going to pay off...they had to. Yes, this scan may explain the current symptoms but at what cost to her morale. We got the call less than 30 minutes after walking out of the clinic. Many four letter words came to mind. It was a different oncologist because ours' was ironically in Switzerland on vacation with his son. He asked to speak with Kathryn. More words. He told Kate that he initially wasn't to thrilled to have drawn the straw to have to call her on a Friday afternoon. He went on that this time he was glad to be calling and that the preliminary report from the radiologist was:
- for the first time he had been reading Kate's scans there was not any progression and that in fact there was a general decrease in the size of her tumors.....
We probably sat there for 10 minutes in a sparsley filled restaurant, holding hands across the table, staring at each other, with tears running down our eyes- speachless.
Thank You.
Thursday, September 7, 2006 4:37 PM CDT CT scan rescheduled for tomorrow at 2:30. It was originally scheduled for Oct 10th but due to a couple of symptoms, it has been moved up. We will post results when we get them. Think tumor necrosis...tumor necrosis....
Tuesday, September 5, 2006 2:51 PM CDT Brett, Grant & I spent the long weekend at my Mom's. We had a great time and Grant declared that he didn't want to go home. "Why," Grant asked himself, "because I am Grant Mortenson." Wow, are we in for it when he becomes a teenager. Grant spent the weekend adoring and tailing his 9 year old cousin, Espen. Thanks Mom, Neil, Tori, Lisa & Espen! You always treat us as though we are on vacation when we come to visit! It was such a great break!
Brett drove to Moorhead on Friday to see his Dad and Mary. Brett arrived to find Mary in excellent spirits and the hospital room buzzing with visitors. Unfortunately, pathology labs confirmed that Mary does have colon cancer. It looks like they got it all and we continue to send them positive energy and prayers that it has been completely eradicated!
On a very sad note, our neighbor Dale passed away on Saturday. I have asked that people pray for Dale's wife, Lois in the past as she battles the "c". She and her family could use your prayers again as they deal with this unexpected loss. Dale is the kind of person that every neighborhood would like to have - he was always waving you in for a quick visit as you drive by, always smiling and upbeat, always out there taking care of that crab grass. The entire neighborhood will miss him.
Peace,
Kate, Brett & Grant
Monday, August 28, 2006 7:52 PM CDT *** We are looking for a part-time daycare or Montessori school for Grant. If anyone has any recommendations, please email or post and let us know. Grant will be 3 in Feb. *** ***Oncology appt. went well. No appt's for two weeks! Yipee!*** ***Mary's surgery went well. We won't know more for a couple of days.**** We had a great weekend. I am feeling MUCH better and have faith that the pain is from the tumors dying their miserable death.
We ventured out to the State Fair yesterday. Grant had a blast and we spoiled him with kiddie rides, cookies, deep fried pickles and a deep fried Reuben. We drew the line at the deep fried Twinkies. Brett & Grant began the day with the kiddie tilt-a-whirl. It was Brett's first and last ride - Grant on the other hand could have "gone round and round" all day. If you have little people, be sure to check out the Little Farm Hands. Grant did "chores" on the farm and earned a dollar for milking a cow, feeding the chicken, planting in the garden etc... It is a great activity - go early or late to beat the crowds.
Jen K. & I spent the morning shopping. For someone who doesn't like to shop, I can sure lose a few hours at the mall. Thanks for the pictures and spending the day Jen! It was fun!
Brett's step-mom's surgery is tomorrow. Please keep her in your prayers. Love to all of you,
K.
Friday, August 25, 2006 8:02 PM CDT **Please say a prayer for Brett's Stepmom, Mary. She is having surgery on Tuesay.**
It is difficult to believe that summer is winding down already. I haven't been able to just sit in the sun or drink any girly summer drinks yet! We haven't walked the around the lakes or gone camping...I guess I have a lot to do these next couple of weeks!
This past week hasn't been a great one. My abdomen hurts and my whole body feels as though I'm fighting off the flu but it is worth it if it means that these tumors are decaying and suffering a painful demise.
Grant is re-adjusting to our being home well. We saw a counselor last week so that we could learn how to best talk w/Grant about the "c" and handle certain situations. I wish we had done it long ago as there are a few things we would have done differently. It is scary that a childs personality and sense of self is cemented by the time they are six and that these are the years that are so critical to their emotional well being. I think we have done a decent job at keeping the "c" out of the house and out of his life for the most part but despite our best efforts, there have been so many disruptions in his life. I desperately wish I could care for him by myself during the day as Grant keeps asking for "time by ourselfses". Soon sweet little thing.... (Grant sings this song by Lucero and is now our "sweet little thing" - great song.)
We hope you all have a good weekend - truly enjoy and relish it.
K, B & G
Wednesday, August 23, 2006 9:09 AM CDT Our trip home was fairly uneventful with the exception of the two hour hold up at customs. As anticipated, I set off the alarms while reentering the US. Unlike our first trip, the officials didn't panic but they did make me stay in the holding area because of the discrepency over what type of radiation i received.After much ado and a few calls to Washington (seriously), they finally let us go (two hours later). It was a facinating lesson in Customs and human behavior. We were seated by the main security check point where peaople were "randamoly" selected to be searched - It was amazing what people carried in their luggage and brought into the US. Even more amazing were the stories and excuses as to why they had these items with them. If you go abroad and bring back any food or souveniers, I can tell you that you had better claim everything! One young man tried to tell the official that where he comes from in the US, pot is legal in that quantity....
We could hardly wait to get our little man back into our arms. He stayed with Steve, Sandy. Conor & Timmer at the lake until Sunday so that my radiation levels could drop a bit more. I don't think that I can leave him like that again. I used to think it would get easier as he got older but the opposite is true. This was by far and away the most difficult trip - he loved spending time with all of his caregivers (THANK YOU Grandma Bop, Mindy & Stu, Sarah, Conor, Coley, Steve & Sandy!!!!!!!!!) but cried everytime I talked to him on the phone. He kept asking me to please come and get him and that he didn't want to wait until Sunday. For me, it was heart wrenching. For Grant, he forgot all about me as soon as he got off the phone and spent the majority of the week having the time of his life. He is a lot tougher than I....
Amsterdam was great - I will try to get Brett to write more on that lag of the trip.
I went for counts at MOHPA yesterday and again I defy the laws of treatment - my counts are higher than they have been in several months. Horray!
Brett & I are so grateful to all of you - especially those of you who have done so much to make our daily lives easier. I know that I continue to say this but I genuinly mean that we can't wait to return the favor for all of you but for much happier occassions.
Love to all of you!
PS - Three cheers for all who walked the 3-day walk for Breast Cancer!! If you have never been out to cheer on the walkers - you should! It is overwhelming to hear the stories of these walkers and to see how many are committed to finding a cure for this disease. Way to go Steph & team!! Thanks for walking! PSS-Have you had your annual checkup yet?
Tuesday, August 22, 2006 2:00 PM CDT Just a quick update: Kate and Brett made it home safely and she is feeling reasonably well. Their computer, on the other hand, has caught some sort of virus so she hasn't been updating. Hopefully, it will be fixed soon.
In the meantime, she is happy and sassy and enjoying the boy. She's enjoying Grant, too!
More soon, Maria
Thursday, August 17, 2006 11:33 AM CDT ***New Post*** If anybody has been trying to call, we moved. To Amsterdam......a day early. Kate has developed too many bad associations with everything Basel. The only way I can relate to this is harkening back to my troubled youth and one particular night of indulging in too much Southern Comfort. Just the thought if it now makes me want to be ill. Kate appreciates everybody (almost) associated with her care and loves Switzerland, but everything- the smell of the hospital room, the view out the window, the water.........Water!.......makes her feel queasy. So we moved on. We will spend two days here and then it's back to our son. More later Brett
Oh yeah, Kate is doing great. *****************Dr. Weenie was a no-show today. Being that he does not have access to this site, I suspect that I scared him away yesterday. I have nothing against a young doctor. In fact, Dr. Berg is not yet 30 himself. I do have a problem w/a doctor who focuses more on potential negatives and throws out unnecessary detail just to sound knowledgeable. But enough about the Weenie. I wish him well and am happy to know that someone out there is interested in continuing to look for treatments for this disease. Someday he will be the Super Weenie if he finds a treatment or cure!
The Chief, Dr. Mueller is a kind, soft-spoken man. He came in without the usual entourage of students to talk with us about our results. He sounded much more positive than Weenie and told us that he hopes these results will last months to even years. He can’t promise anything since this type of "c" is so rare. Dr. Mueller actually used the words "some shrinkage" - and not the George Costansa kind. He was happy that there has been a stabilization of the tumors and absolutely no growth (for the first time since my diagnosis!). We hope to see even further benefit from this second treatment when we have our CT scan in 3 mths. Remmission here we come! Three months feels like a long time to wait but as Dr. M reminded us, the waiting time is the time for living. Brett questioned him on the future of anti-angiogenesis drugs (like the one at Duke) and he shared the same belief of other experts, that it is the hope of the future.
So we choose to spend these next three months living as normally as possible, focusing on that which we can control.
We are happy, anxious, hopeful, exhausted & we miss our son dearly. We hope to get some respite from this whole deal – maybe now I have concentration better than that of a one year old and stop writing like that of a ten year old trying to be e.e.cummings (without a ny talent of Cours e)Grant is doing great – he loved spending time with his Grandma Bop and his friend’s Emma & Ella. He is back at home w/Sarah and seems to be happy. Much love to all of you. Thank you for the posts – we always appreciate them but you have no idea how much we appreciate the well wishes while being stuck in a hospital room with nothing but CNN. Brett cranks up the puns while on these trips…funny…but….
Love to you all. K &B
Tuesday, August 15, 2006 8:05 AM CDT **update since previous update today. We met with our doctor who kate affectionately calls the little weenie thie evening. he gave us good news that the tumors again had good uptake and that the first treatment definately had an impact on the tumors. He said that it now is just a waiting game until 3 months from now when we will do a CT scan. So pretty much what we expected. We ran into a little problem while hammering him with questions. Kate asked when we should be looking to schedule another treatment. He responded that he wasn't sure if Kate's body could tolerate any more radiation. He said with all of the other radiation she had received prior to this treatment that luekemia could be a long term side effect. Kate responded with something like- bring it on, give me the oppurtunity to have side effects when I am 50. So what was really good news left a little bitter taste in our mouth because of this dialogue. He later retracted this stance but Kate already decided that she no longer cared for his opinions. I told her to ease up because the French are known for surrendering early. We went across the street for ice cream and beer. Kate was in the middle of saying that she wanted our previous doctor back. I told her we would email him when we get home. Just than who should walk right behind her than Dr. Berg (kate's hero) himself. He said he was on holiday and had never been to this restaurant before. Thanks to whoever sent that one our way. Longer than expected story longer. He said everything sounded good with our results and that he was going to stop into the hospital and see us tomorrow. Kate's entire demeanor changed she states that she is BACK BABY! More details later
Brett So why Switzerland? Der Schwiez, the sequel- part 2
Church bells were ringing... Several, in fact. We are in ear shot of multiple churches ringing on the hour last night; rubbing in the fact that we had indeed not escaped the jet lag like we had bragged about just yesterday. We were positive that we had achieved uber traveler status and were immune to this sort of thing. After two nights of sleeping through the night we thought we were in the clear. I was lying awake long enough last night to enjoy the clangs observing 2, 3, 4, and 5. Kate had been doing amazing until 9:00 last night. Once again we had been making grand plans for the rest of our stay assuming that Kate was immune to the nausea that we had anticipated from our last experience. It too returned, also later than expected, and made for a miserable night for dear Kate. So much for our cheating the laws of nature.
So why Switzerland? We strolled into the hospital yesterday like returning family members. All of the same faces, only a nod was needed to tell us that we would be staying in “our” room again. We knew that we would not be in the capable and caring (beer treatment) hands of Dr. Berg on this stay. He had moved on to his next rotation. I knew that whoever (be it Marcus Welby M.D., Dr. Carter, or even Quincy himself) walked through our door was going to be looked at skeptically by our patient. In walked Dr. Nicolas who was younger than our previous Dr. Berg and even made a point to mention it. I could sense Kate’s competence radar locking on to him and after a somewhat shaky start she seemed to settle on him meeting the criteria –with some prodding. He is from France and wants to continue to work with rare cancers and this particular treatment. The reason for Switzerland becoming our main treatment option is that this is the only place they do this. The treatment objective is the same as it was in San Francisco: #1- do a specialized nuclear medicine scan to see if the tumor cells have a high number of a specific receptor. #2- Attach a radioactive isotope to a compound that binds to these receptors. #3- Send a large dose of it into the blood stream and hope that it attaches to the tumor and leaves the rest of the body alone. #4- Once bound to and incorporated into the tumor; hope that it does a lot of damage to the tumor. #5- Hope that you found the right balance of getting a high enough dose of radiation into the tumor and not made things worse for the patient. The University Hospital that has become our vacation home in the Alps is the place where this particular compound that binds to these tumors was invented. They use a different isotope here called 90-Yttrium. The nice thing about this guy is the radiation given off only travels a few feet. Theoretically this would be less damaging to the rest of her body. The other benefit is I can lie in a hospital bed six feet from her and peck away at a computer without glowing in the dark myself. The 131-Iodine that is used in San Fran is a different type of radiation emitter that sends off its radiation for longer distances, thus the lead room and shield during our previous treatment. Currently, there are only two places in the world that do this treatment. Here and the Netherlands. We were not candidates for the Netherlands treatment because they use yet another isotope that’s side effects includes bone marrow damage. They felt she had enough of that kind of fun in San Fran. Dr. Nicolas was able to give us some additional info on how the additional treatments affect the tumors and on statistical outcomes. He told us that the second treatment can multiply the effects of the first treatment for some while for others most of the therapeutic benefit is seen with the first. We are choosing the former. 70 f the patients with this disease achieve some response. Response is broken down to: in rare cases -4 patients experience complete remission. A somewhat larger percentage achieves partial remission (tumor shrinkage). The majority of patients experience “stable disease” where the tumors do not grow for a period of time. That would be the key if stable disease is our outcome- how long does will it last? They tell us several years but there once again aren’t enough stats to be conclusive. We again will be choosing response #1. Thanks are in order again, It is due to the generosity of many that we are able to make this pilgrimage.
We were initially told that we would not know anything until doing a CT scan 2-3 months after this treatment. However, after briefly chatting with Prof. Mueller (head of program) he feels he might be able to give us some ideas after looking at the scans on this trip. If you have been waiting for the perfect time for this, now is the time. Repeat after me: Dear God, Please Make Kate Well Now.
This feels like more of a business trip this time. We shortened our stay on either side of the treatment so as to minimize time away from Grant. We went to the Kuntsmuseum for the day – Kate enjoyed the art. I enjoyed getting out of the rain and wind for awhile. This particular museum housed some of Europe’s oldest works.
***Homework assignment for all of you past life regressionists out there. My wife gets the heebie jeebies around the art of the Old Masters, much the same way she felt walking through the castles of Ireland and England. Literally a strong visceral response. I have two theories: Due to her requirement of fine bed linens and a knack for lording over her followers/husband, she may come from royalty. The second possibility is that, true to her current form, she got into trouble rallying the public against the then current administration and was burned at the stake. I have a lot of time on my hands right now.
Oh look, the sun is finally coming out and we are stuck in this room.
Cheers, Brett
**UPDATE: We just got a two hour pass and it is sunny and beautiful! I slept all day and am feeling much better! My counts dropped again?? Nothing in the low,low range however. Laura S - gald to know you made it to Sydney safe & sound! Happy BDay Lynn, Alley, Kathy, Julie J & Jeannie Stangler! Love to you all. Thanks for the prayers and affirmations. They mean everything to us. Kate
Sunday, August 13, 2006 5:02 AM CDT Cold and rainy in der Schweiz. Unseasonbly cold and rainy. Last time we were here we were complaining about the lack of air conditioning. Not a problem this time. I finally get my wife to pack "more reasonably" and now we are lacking in proper attire. We got here with only a small amount of drama this time. Nothing to do here on a rainy Sunday. All of the shops and restaurants are closed. So once again we are hanging out at......... Starbucks. Who didn't see that one coming- We are such Amercian homers. Our Air Swiss puddle jumper had some technical difficulties and stranded us on the tarmack for two hours. About the time Kate started getting that caged animal look, a mom traveling with her 8 month old had a melt down and stormed off of the plane with much drama. I felt horrible for her, but the show was just the distraction I was looking for to keep Kate from running off of the plane herself. The hotel queen is happy with our room. We are on the oppoiste side of the Rhein this time. An interesting part of town called the Messeplatz which, the last time we were here, was crawling with art fair patrons. Now real quiet with lots of strange little shops. The most humerous being the Crazy Sexy Store (no we did not go in). Do not be confused. I am not complaining. Having my to myself in another country is as good as it gets. Tomorrow we will check in to the Krankenhaus (translated means sick house or the hospital). Kate will get the radio-isotope injection at 12:30 and will do so with a smile. I am awestruck by how she continues to fight on without complaint. She has a strength that I could only wish to have under these circumstances.
Dear God, Please Let Kate Be Well......Now.
More to come, Brett
Happy 50th anniversary Bev and Ray
Tuesday, August 8, 2006 10:02 PM CDT Good vibes heading into our Friday departure. Kate's cell counts are up slightly- up is up and hopefully signal a return to normal trend. Tumor marker is down at 800. Roughly half of our previous number. We want to again thank everyone for their help getting us ready for round 2 and for all who are caring for our little man. Thought / Prayer for the coming week. Dear God, Please let Kate be well. Rolls off of the tongue and can be easily muttered at stop lights, during commercials, between breaths...
Thanks for checking in, Brett
Happy Birthday Bulldog!
Sunday, August 6, 2006 10:53 AM CDT "Never say never..." This heeding replayed over and over in my mind this weekend. These words of wisdom came from my girlfriend Mindy after I had criticized the way a woman yelled at her child in the grocery store years ago. Wow, was I the perfect mother before I had a child or what!? Well, Grant and I rarely make trips to the grocery store together but this morning I did something else that I thought I would nver do. I bribed my child to get him to go to the coffee shop with me --- it only 8am and I told him that he could have a sucker if he walked with me! Once we got there, he also had a muffin. So much for not allowing Grant to have refined sugars! Yesterday was no better. As most of you know, Brett & I try to eat pretty healthy and pre-child I had vowed never to let my son eat at McDonald's. Once again, never say never... Grant had his first McD's cheeseburger, fries and orange drink beneath the banner of the yellow archers! He didn't like the cheeseburger but he thought the fries and orange drink were terrific!
Our neighbors are fantastic. Already this morning we have had one family offer to take Grant while we are away next week and another just drove by as I am typing and offered to pick up groceries. Who needs the burbs for community!! Thank you to all of our neighbors!
Baby Torger continues to exceed expectations and our wonderful friends, Todd & Julie S. just had a little boy! We can't wait to meet you baby Jacob!!!!
We tried moving Grant into real underwear yesterday. He flew around like Superman for the first 30 mins. (they are Superman undys), proceeded to pee in the next three pair over the second 30 minutes. Back to the pull-ups... Grant hasn't decided whether he really wants to be potty trained - apparently, neither have we.
As I tucked Grant into bed last night, he put one arm around me and pulled me in tight. With a big squeeze he said, "Mommy, I am really glad you're here with me". I am really glad that I am here with you too sweet boy.
K.
*We'll update after we get the tumor markers and blood results. Oh yeah - we received an email from Switzerland stating that all should be a go regardless of my blood levels (unless something goes really awry)!
**It is that time of year again for one of my favorite charities, The Caring Tree. I first heard of The Caring Tree when I was working for Merrick Community Services in St. Paul. The Caring Tree collects school supplies for young people to ensure that they have the proper equipment to start the year off right! I have always felt that this is a very important charity - I know that it is more important to have food on the table and a safe home etc... but I also believe that having the right (or any) crayons, calculator etc... can prevent relentless teasing from other students. So, if you see a sign at the malls or stores that say Caring Tree, please consider picking up an extra bottle of glue, kleneex or whatever else you may wish to send along with a child on his/her first day of school.
Love and many blessings to all of you!
Saturday, August 5, 2006 10:24 PM CDT Wow - The first book that has ever been published regarding this crummy disease (I am sure that this is riveting):
Pheochromocytoma: First International SymposiumEdited by: KAREL PACAK (National Institute of Health USA) and GRAEME EISENHOFER (National Institutes of Health, USA)
Series: Annals of the New York Academy of Sciences
Description Pheochromocytoma is a rare neuroendocrine tumor with a highly variable presentation. There is lack of agreement about the most efficient and cost-effective methods for diagnosis and localization of the tumor, which can be lethal if not identified and treated promptly.Autopsy studies indicate that up to 50% of all cases remain undiagnosed until death.
Between 30 and 35% of the tumors have a hereditary basis. Development of malignancy is highly variable -- from less than 5% to more than 50% depending on the mutation; there is currently no effective cure.
This volume encompasses a number of themes in several sections: genetics and clinical decision-making; genetics, molecular pathways of tumorigenesis, and divergent phenotypes; kaleidoscopic presentations and a minefield for differential diagnosis of pheochromocytoma; biochemical diagnosis: can we reach consensus?; tumor localization and the evolving importance of functional imaging; and new molecular markers and targets for diagnosis and treatment of malignant pheochromcytoma.
NOTE: Annals volumes are available for sale as individual books or as a journal. For information on institutional journal subscriptions, please visit www.blackwellpublishing.com/nyas.
ACADEMY MEMBERS: Please contact the New York Academy of Sciences directly to place your order (www.nyas.org). Members of the New York Academy of Science receive full-text access to the Annals online and discounts on print volumes. Please visit www.nyas.org/membership/main.asp for more information about becoming a member.
TopTable of Contents Introduction: Karel Pacak and Graeme Eisenhofer
Part I: Pheochromocytoma: A Kaleidoscope of Presentations and a Minefield for Differential Diagnosis: 1. Diagnostic Challenges and Vagaries of Pheochromocytoma: William M. Manger 2. Clinical Characteristics of Incidentally-Discovered Pheochromocytoma Based on Experience in 50 Proven Cases: Emmanuel L. Bravo 3. Clinical Experience with 1080 Adrenal Incidentalomas Observed at a Single Endocrinological Center: A Place for Chromaffin Tumors: Anna Kasperlik-Zaluska 4. Characteristics of pheochromocytoma in a 4- to 20-year-old population: Marta Barontini 5. Pheochromocytoma During Pregnancy: A Literature Survey: Henri Timmers 6. Lack of Symptomatology in Patients with Histological Evidence of Pheochromocytoma: A Diagnostic Challenge: Debbie L. Cohen
Part II: Genetics: Increasing Importance for Clinical Decision-Making: 7. Predictors and Prevalence of Paraganglioma Syndrome Associated with Mutations of the SDHC Gene: Hartmut Neumann 8. Genetic Analysis of Pheochromocytoma: The Rotterdam Experience: Winand N.M. Dinjens 9. Molecular Genetic Analysis of the NF1 Gene in Neurofibromatosis-Associated Pheochromocytoma: Birke Bausch 10. Candidate Gene Mutation Analysis in Pediatric Pheochromocytomas: Ronald R. de Krijger 11. Familial Non-Syndromic Pheochromocytoma: Giuseppe Opocher 12. Genetic Mutation Screening in an Italian Cohort of Non-Syndromic Pheochromocytoma/ Paraganglioma Patients: Maurizio Castellano 13. Importance of SDHB Mutation Testing in Patients with Malignant Pheochromocytoma: Frederieke Brouwers
Part III: Pheochromocytoma/Paraganglioma Syndromes: 14. Paragangliomas: Clinical Overview: William F. Young, Jr. 15. Genetics of Pheochromocytoma/Paraganglioma Syndromes: Anne-Paule Gimenez-Roqueplo 16. SDHD, SDHB Mutations: Different Phenotype and Penetrance (International SDH Consortium): Diana Benn 17. Mutational Spectrum of Paragangliomas Obtained from Archival Paraffin Sections: Jeffrey Kant 18. Sporadic SDHB Mutation in an Extra-Adrenal Pheochromocytoma: Francien H. Van Nederveen 19. SDHD Founder Mutation in Italian Families with Head and Neck Paraganglioma: Francesca Schiavi
Part IV: Tumor Biology, Molecular Pathways of and Genotype/Phenotype Relationships: 20. Role of Familial Pheochromocytoma Genes in Developmental Culling of Sympathetic Progenitors: William Kaelin 21. RET Receptor Signalling: Dissecting Receptor Function and Dysfunction: Lois Mulligan 22. Hereditary Paraganglioma: An Emerging Link Between Krebs Cycle and Hypoxic Signaling: Bora E. Baysal 23. Linking Hypoxia and Redox Signals in Pheochromocytoma: Transcription Association of VHL and SDH Mutations: Patricia Dahia 24. Expression of mRNAs for Succinate Dehydrogenase Subunits and Related Genes in Pheochromocytoma: Kazumasa Isobe 25. Low SDHB Expression by Immunohistochemistry Discriminates Pheochromocytoma with SDHB, SDHD and VHL Mutations from Other Hereditary Forms: Sandro Santagata 26. Mouse Pheochromocytoma Cell Lines Reveal Transcriptional Silencing of Adrenergic Phenotype by Neurotrophin and cAMP: Marian J. Evinger
Part V: Biochemical Diagnosis and Tumor Localization: 27. Plasma Free Metanephrines for Diagnosis of Pheochromocytoma: False Positives and Effects of Sampling Conditions: Jacques W.M. Lenders 28. Advancements in Biochemical Diagnosis of Pheochromocytoma: Ravinder Singh 29. Multicenter Study on the Diagnostic Value of a New RIA for the Detection of Free Plasma Metanephrines in the Work-Up for Pheochromocytoma: Tomas Lenz 30. Diagnostic Value of Plasma and Urinary Metanephrines and Catecholamines for the Diagnosis of Pheochromocytoma in Patients with Adrenal mass: Stephan Petersenn 31. Evolving Role of PET Imaging for Diagnostic Localization of Pheochromocytoma: Karel Pacak 32. Elusive Pheochromocytomas: Detection with Functional Imaging Using MIBG and FDG PET: Barry L. Shulkin
Part VI: Management and Treatment of Pheochromocytoma: 33. Risk-Oriented Surgical Approach to Hereditary Pheochromocytoma: Henning Dralle 34. The Course of Urinary Metanephrine Excretion in Recurrent and Malignant Pheochromocytoma: Pierre-Francois Plouin 35. Mortality Associated with Pheochromocytoma: Increased Risk of Additional Tumors: Amir Khorram-Manesh 36. Clinical Analysis and Management of Pheochromocytoma: Experience from 360 Cases in Peking Union Medical College Hospital (PUMCH), Beijing, China: Zheng-pei Zeng 37. Magnesium Sulfate in the Perioperative Management of Pheochromocytoma: Michael F. James 38. Treatment of Bilateral Pheochromocytoma and Adrenal Medullary Hyperplasia: Svante Jansson
Part VII: Malignant Pheochromocytoma: 39. Phase II Study of High-Dose 131I-MIBG Therapy for Patients with Malignant Pheochromocytoma and Paraganglioma: Paul A. Fitzgerald 40. 131I-MIBG Radiotherapy: Long-term Experience with Treatment of Malignant Pheochromocytoma and Paraganglioma: Jon P. Gockerman 41. AT2 Receptor Stimulation May Halt Progression of Pheochromocytoma: Morris J. Brown 42. Can Quantification of VMAT and SSTR Expression be Helpful for Planning Radionuclide Therapy of Malignant Pheochromocytomas: Lars Kölby 43. Development of Novel Tools for the Diagnosis and Prognosis of Pheochromocytomas Using Peptide Marker Immunoassay and Gene Expression Profiling Approaches: Youssef Anouar 44. Gene Expression Profiling of Benign and Malignant Pheochromocytoma: New Markers for Prognosis and Targets for Treatments: Peter Munson & Graeme Eisenhofer
Wednesday, August 2, 2006 9:51 PM CDT We should be ok to go to Switzerland next week - we won't know for certain until next Tuesday. My blood results show that my counts are still dropping. They aren't dangerously low as they were last summer but they continue to go down a little each week. We hope to hear from the Swiss Dr's tomorrow so that they can tell us if they will take me with my counts as they are or if they need to see them higher first. We also drew a Chromogranin A test (tumor marker) today for the first time in 2 months. We hope to have those results by next Tuesday as well. Keep your fingers crossed. So, we want my white & red blood counts to go higher and my tumor marker results to go lower (0 to 30 is normal. Last we checked, I was at 1050). Think ZERO!!!
Brett & I saw Torger Ohe today. He is a beautiful little guy and doing really well. Of course I cried...he is a little miracle.
Grant had a great morning but was a bit of a pill this afternoon. He has a drippy nose tonite and we hope that a good nights rest will take care of the problem.
Love to all of you,
K
Monday, July 31, 2006 4:19 PM CDT Hello all!
Wow, Wow, Wow! I cannot believe that we leave so soon! We are so close to getting rid of this "c"!!! We will do our first CT 8 weeks after this next Switz. treatment... keep your fingers crossed!
Thank you to everyone who has offered to take care of Grant while we are away. We think we have it covered - Brett's Mom, Mindy, Sarah (our nanny) and Steve & Sandy will cover for us. While we don't need any help the week we are away, we would love to have more playdates! I am not always up for getting together but Grant & Sarah are available! We would like Grant to have the opportunity to hang out with kids his age so give us a call or send an email if you would like to get together for a playdate.
A huge congratulations to Alley, Jeff & Baby O - Torger Ohe!!! I hope that I am spelling this correctly! Torger is four pounds and doing quite well. Alley & Torger are at Methodist Hosp. Alley - you are incredible!
Karin - thank you for today - I am so blessed to have my wonderful friends.
Finally, today was Charlie Bendell's last day of chemo EVER! Hooray Beans! You are such an inspiration!!!!
Love to all,
Kate
Sunday, July 30, 2006 6:45 PM CDT I can't believe I lost this journal again!! Maybe it is karma as I was a bit ticked at a few things and ranted on and on about something that I should just confront directly. Alas, you have been saved once again from my raving.
Yikes - Julie S, your post scared that Jimminy Crickets out of me! 12 days - that is it??? I am not at all ready!!! We are having a bit more difficulty in covering for Grant - most of my family will be out of town and unable to cover for us. Brett's mom will cover the first couple of days, Mindy will cover a couple of days and we will fill in the rest over the next day or two. It is a good thing that kids are so resilient because I am not thrilled to have so many caregivers coming in over the week - although I AM appreciative and grateful to all of you for filling in!!! The good news is that Grant adores everyone that we have lined up to care for him while we are gone.
My original post (which was lost due to my confidence that I wouldn't lose it) included a very heartfelt thank you to all of you who have been bringing us meals as of late. I don't have as much abdominal pain as before but the fatigue and exhaustion is kicking me in the rear! I have missed seeing several of you due to the fact I was resting or out but I want you to know how grateful we are and how we think of each of you as our angels! Brett & I are big beleivers in the importance of showing up for people. Thanks for "showing up" for us. I also sent out a huge thanks to Andrea for all that you did this weekend and for helping out so Brett could get a night out on the town w/the guys. A very rare event these days!!! He had a great time! Thanks!
More tests tomorrow and Tues. We'll let you know when we do.
Much love, gratitude and patience to all of you, K
PS - Please continue to keep Jeff,Alley & Baby Ohe in your prayers. PSS - Happy BDay Julie Bennes! PSSS - Thank you Troy for the Martin Zellar CD's and autograph... Sorry we missed it!
Thursday, July 27, 2006 12:43 AM CDT Grant is doing great! He is a healthy, normal two year old (2 1/2 next month) who loves to play cars, swim, sing and dance. He loves to make up bedtime stories before I tuck him in to sleep - which usually includes Princess Grace, Superhero Grant, a dragon, an animal in need of rescue and sometimes "mean hunters." Yes, he occasionally throws cars, doesn't ask to be excused from the dinner table or may even takes a swing at another toddler w/whom he is playing. He has the kindest heart and always wants to be a helper, especially if he feels that someone or something is sad. He is creative, intelligent and giving. The other day, he earned enough stickers for a particular behavior that he was able to go to Target to pick out a toy. Unprompted, he insisted that he instead buy his friend Grace a toy. I thought he would forget but as soon as we reached the toy isle, he chose what was to be a gift for Gracie. I think that is pretty impressive for a 29 month old.
I am excited to see the man he becomes as he gets older. I can't imagine being any more fortunate.
Monday, July 24, 2006 10:31 AM CDT *Please keep Alley, Jeff & Baby Ohe in your prayers... Baby O. tried to make a break for it at a mere 29weeks. Alley will be in the hospital on bed rest until Babe settles down.*
Kate just got back from MOHPA and her counts are still good! They referred to her as a "medical mystery". Here are other words for mystery, according to the thesaurus: abstruseness, brain twister, brainteaser, charade, chiller, cliffhanger, closed book, conundrum, crux, cryptogram, difficulty, enigma, grabber, inscrutability, inscrutableness, mind-boggler, mystification, occult, oracle, perplexity, poser, problem, puzzle, puzzlement, question, rebus, riddle, rune, secrecy, sixty-four-dollar question, sphinx, stickler, stumper, subtlety, teaser, thriller, twister, unfathomableness, who-done-it
Let Kate know which of these words also fits her ability to kick cancer's a**! Have fun with this and we'll let the "c" know who is in charge!
Kate asked why she is so darn tired if her counts are so great. They explained that the treatment was a major assault on her body, so good counts or not, she was goint to be knocked on her butt for a while. She may be tired, but for the first time in months, she is also bored!! Good sign if you think about it. When you get the flu, the first few days, you feel so lousy that you don't care about much. Then,as you are getting better, you start getting restless and a little bored, even though you are still tired. I'm teaching her Sudokhu!
Enjoy your summer days, and keep on dancing..
Maria
Tuesday, July 18, 2006 3:54 PM CDT All results still look good! My counts are low but are not in the critical range! Maybe they won't dip as low as they expected them to go?!? We would be thrilled! I will go in again if I begin to feel worse, otherwise I will go in next Tuesday just for peace of mind. We went ahead and booked our plane tickets for our return to Switzerland. We leave for round two on the 11th of August. I feel less trepidatious about this trip than I did the first. The original study published on this treatment suggested that it would add 6mths to our fight. I didn't want to leave Grant and didn't feel well so the idea of the first trip was not too appealing. Now, they are telling me that they hope to add four years WHEN (they say if) this treatment works for me. Medical technology and advancements change everyday - four years gives us a lot of time to find the cure! So for now, this is our focus - feeling better each day and that this Swiss treatment is effective.
We have had many comments about the photos (we will try to add new ones tonight). The photographer is Margo LaPanta. We were thrilled with her work(despite the fact that both Grant & I were having a rough morning!)! If you ever need a photographer, we would highly recommend her!
Congrat's to Keenan's & Kennedy's on the births of your baby girls!
If you haven't done so, please purchase a raffle ticket from Josh's website found below. He is battling the "c" and the proceeds of the raffle will help them with the extensive costs of such a journey.
Much love and many blessings to you,
Kate
Thursday, July 13, 2006 3:43 PM CDT **Clarification: The test I had last week was not anything serious - it was just the procedure itself - I've done one before but this one topped all others due to the tech. We still don't have results but we don't expect it to show anything terrible. Sorry if my last entry scared ya!
**New pictures** Hi - Brett & I have been terrible at our updates as of late. We read the guestbook daily, but.... Too tired? Too well? Too lazy? too some lame excuse to update!
There are so many insults to ones dignity when you have cancer - today may have topped the cake. No need for details - we will let you know the results when we get them.
We have had a busy and good week. The last week was filled with a trolly ride, swimming at Lake Harriet, visiting with my brother & family (WA state), hanging with almost all members of my family (you all rock), watching the new RockStar Super Nova (sad.. but true), appointments, meltdowns and laughter. Overall, I am still feeling great. It is all relative to where I was at prior to the Switz treatment but we are thrilled. I still get exhausted far too easily and Brett has had to reign me in too often, but it is going well.
My girlfriend Karin sent this to me today. I don't usually pass along string emails but I liked this one so much I thought I would post it. I have always struggled in the past to let people "help" me or "carry" me - that may be my lesson in this journey -thank you to all of you who have kept us going, lifted our spirits and at times, literally held me up. Love and gratitude to all of you... K.
Sisters. . . A young wife sat on a sofa on a hot humid day, drinking iced tea and visiting with her Mother. As they talked about life, about marriage, about the responsibilities of life and the obligations of adulthood, the mother clinked the ice cubes in her glass thoughtfully and turned a clear, sober glance upon her daughter. "Don't forget your Sisters," she advised, swirling the tea leaves to the bottom of her glass. "They'll be more important as you get older. No matter how much you love your husband, no matter how much you love the children you may have, you are still going to need Sisters. Remember to go places with them now and then; do things with them. And remember that "Sisters" also means your girlfriends, your daughters, and other women relatives too. You'll need other women. Women always do."
'What a funny piece of advice!' the young woman thought. 'Haven't I just gotten married? Haven't I just joined the couple-world? I'm now a married woman, for goodness sake! A grown-up. Surely my husband and the family we may start will be all I need to make my life worthwhile!
But she listened to her Mother. She kept contact with her Sisters and made more women friends each year. As the years tumbled by, one after another, she gradually came to understand that her Mom really knew what she was talking about.
As time and nature work their changes and their mysteries upon a woman, Sisters are the mainstays of her life. After more than 50 years of living in this world,
Here is what I've learned: THIS SAYS IT ALL: Time passes. Life happens. Distance separates. Children grow up. Jobs come and go. Love waxes and wanes. Men don't call when they say they will. Hearts break. Parents die. Colleagues forget favors. Careers end. BUT.........
Girlfriends are there, no matter how much time and how many miles are between you. A girlfriend is never farther away than needing her can reach.
When you have to walk that lonesome valley and you have to walk it by yourself, your girlfriends will be on the valley's rim, cheering you on, praying for you, pulling for you, intervening on your behalf, and waiting with open arms at the valley's end.
Sometimes, they will even break the rules and walk beside you. Or come in and carry you out. Girlfriends, daughters, daughter-in-laws, sisters, sisters-in-law, Mother, Auntie's, nieces, cousins, and extended family, bless our life! The world wouldn't be the same without them, and neither would I. When we began this adventure called womanhood, we had no idea of the incredible joys or sorrows that lay ahead. Nor did we know how much we would need each other. Every day, we need each other still.
Tuesday, July 4, 2006 8:58 PM CDT -------Tues July 11th ---------Still holding my own on the blood counts. Waiting for some test results & we will update Thurs or Fri. Grant is proud to tell everyone that he is " a big, big boy" who now sleeps in a "big boy bed." Much love to all of you!
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****Blood work loooked good today! Other than feeling tired, I am doing great! ******* ************************************ Happy Fourth of July!!
We had a great independence day celebration! Brett & Grant made pancakes for breakfast and then we rushed off to the Edina parade where Grant ohhhed and ahhhed over the fire trucks. Just when Grant thought his day couldn't get any better, we went to the St. Croix Rail-yard to meet Karin, Grace, Julia, Andy and family. Not only did Grant get to spend the day with Grace, he got to do it riding around on miniature trains. I am quite sure he thought this was the best day of his entire life (all 28 mths of it)! Brett was pushing to get us to go to the 10pm fireworks but both Grant and I could barely get up from the couch for dinner. I promised a very disappointed boy that Grant & I would take him next year! Thanks Cebulla's! We had such a fun day!!
I have been feeling great these past couple of days (I know Becky, I am sure that means my counts are low)!!! I haven't felt this well in months - I am tired, but it is a different kind of tired. Prior to our trip, I was struggling to walk well and maintain my balance. Brett's nickname for me has always been "coordniKate" but it was getting ridiculous. There is no doubt that this treatment is having an effect on the "c"! Yippee!
We will go to MOHPA for labs tomorrow. I am pretty sure my counts will be low but that ain't no thing....
Please be sure to click on the link for Joshua below & show your support by purchasing a raffle ticket! Charlie - Words can't describe how happy we are that you kicked the "c" to the curb! Please click on his link also and send your congrats and encouragement!
Lot's of love to all of you! Happy Birthday Sarah (July 2nd)!
K, B & G
Thursday, June 29, 2006 10:13 AM CDT We had our first blood test yesterday. My red cells have begun to drop but other than that all is well. We don't expect my cells to bottom out for another week or two. Next test is Wed. I don't miss the daily trips to MOHPA but I do enjoy seeing our MOHPA nurses on a regular basis again! Congrats to Lewis and Leann on the arrival of their first little ones!
Please, Please, Please click on the link for Joshua Peterson below. Write him a note, send him a prayer & send a dollar for a raffle. We have over 130,000 hits to this site - It would make my week if each of you who check in with us would send $1 & for one of you to win the mini chopper (although I have no idea what this is... :). You have all been so incredibly generous to us, I hate to ask for more but it is such a great cause... Thank you!!!
We went to the kiddie pool with Karin and Gracie yesterday. Grant had a blast - I have never seen a kid who loves water as much as he does! He loves his "friends" (he calls every child he sees his friend even if he has never met them). If anyone is free for a playdate, Grant always loves to hang w/other little people! I may not always be up for it but our "nanny", Sarah would love to get together (she is really great with kids!)!
I;ve got to run - Grant is trying to investigate our cat's rear end - poor bootsie!
Love to all of you and have a wonderful 4th!
K & G
Thursday, June 29, 2006 10:13 AM CDT We had our first blood test yesterday. My red cells have begun to drop but other than that all is well. We don't expect my cells to bottom out for another week or two. Next test is Wed. I don't miss the daily trips to MOHPA but I do enjoy seeing our MOHPA nurses on a regular basis again! Congrats to Lewis and Leann on the arrival of their first children!
Please, Please, Please click on the link for Joshua Peterson below. Write him a note, send him a prayer & send a dollar for a raffle. We have nearly 140,000 hits to this site - It would make my week if each of you who check in with us would send $1 & for one of you to win the mini chopper (although I have no idea what this is... :). You have all been so incredibly generous to us, I hate to ask for more but it is such a great cause... Thank you!!!
We went to the kiddie pool with Karin and Gracie yesterday. Grant had a blast - I have never seen a kid who loves water as much as he does! He loves his "friends" (he calls every child he sees his friend even if he has never met them).
I;ve got to run - Grant is trying to investigate our cat's rear end - poor bootsie!
Love to all of you and have a wonderful 4th!
K & G
Tuesday, June 27, 2006 7:25 AM CDT ******************** Thanks for updating Maria - We have been trying to catch up on some rest and hang with the little guy. He has been so happy and lovey - what a welcome home! I want to take a minute and thank everyone for the tremendous support and kindness shown (always) while we were away. Thank you for taking wonderful care of Grant Neil, Tori, Lisa, Espen, Mom, Sarah, Timmer, & Maria(& family). Thank you for the plane tickets to Paul & Lynn. Thank you for mowing and cat caring to our neighbors Ben, Rachael, Wade, Patty and Aaron. Thank you for weeding, cloroxing, and finishing the play room to our friends Mindy, Stu, Jen & Karin. Thank you for the flowers, grocery runs, errands, cookies,meal preps to our friends & family who are too numerous to mention here. n Thank you to everyone for the prayers, notes, well wishes and love sent by all. We couldn't fight this battle without you - Brett & I truly can't imagine what this journey might be like if it weren't for the wonderful people around us shrouding us in love. We are eternally grateful... Kate, Brett & Grant *************************************** Joshua Peterson (see link below) is a dog loving, adorable little boy who is battling cancer. Please purchase a raffle ticket to help off set the incredible costs of treatment. Joshua's parent's are both MHD grad's. Thank you!
A BENEFIT FOR JOSHUA
The Happy Hooligans (Chad's National Guard Unit) are raffling off a mini chopper. Proceeds will go to Joshua and the daughter of another guard member who has cancer. Raffle tickets are $1 per ticket and can be purchased now through September. Just email me at petesnchicnplus2@msn.com and let me know how many tickets you would like and an address where I can send them. *************************************** It must be Europe air that inspires daily journal entries, because it sure hasn't been happening lately! Kate and Brett did return to the states successfully. They arrived Saturday night, much to the delight of Grant. The only wrinkle was that it was thundering when we got out of the car and he was very concerned about being outside, even if his mom and dad were hugging him a last. He declared, "There is a bad storm coming!" and pointed to the front door. Smart kid! Kate looks fantabuous, as usual. She is nauseous but is anticipating that this run will be easier than the San Francisco recovery. On Monday, she was given the ok to cuddle with Grant, as long as she doesn't stay too close to him for long periods of time (such as sleeping next to him overnight). Now, it's back to the routine..wait and see. Blood counts will be done regularly watch her numbers, she is expecting to do a transfusion or two, and then by week 6, she should be through the worst of it. Then it's back to do it all over again! Thanks for your love and support. It makes a difference each and every day.
Maria
Friday, June 23, 2006 11:52 AM CDT We are finally coming home. Flight leaves at 7am tomorrow – 16 hours later we will be hugging our little man. Although he was more interested in Teletubbies than he was to talk with us on the phone today, we can hardly contain our excitement to see him!
Now comes the hard part. Similar to the MIBG treatment received last year, I am not to hold Grant or be close to him for more than a moment at a time. I must keep an arms length away from him until Monday or Wednesday (hmm…I’m not sure how I am to make that determination?!?). I think most mother’s can understand how heartbreaking it is to be away so long only to return and still not be able to hold your child – no, I am wrong in this. I don’t think most mother’s can understand – those who have been ill themselves or whose child has been sick possibly, but not most mother’s. Prior to my illness, I may have thought it would be very difficult to be away, but the necessary “vacation” would be a welcome break albeit a difficult one. For me, I feel this intense, almost overwhelming need to be with Grant all of the time. I worry that if we don’t find a cure to beat the “c”, he may not know me or remember me. He may not know how fiercely he is loved and adored. I want him to remember that we sing together every day, that I make up stories about him and Gracie and that we dance and play. I want him to remember me nagging him to brush his teeth, put on a hat when it is cold, where clean underwear. I want him to remember my cheering him on in tball, soccer, plays or whatever he chooses to do with his life. I want him to remember how hard he makes me laugh and be embarrassed by the way that I brag about his intelligence, looks, sweetness and general personality. Poor kid, I am going to smoother the boy!
I suspect that my mind has wandered to the what if’s today because for the first time in a long time we feel extremely hopeful. It is so much easier to wallow in sorrow when there is a possible light at the tunnel. I don’t intend to spend much time here as it does not do any good to “what if” or let fear direct your mind – thus intentions. So, here we are. I need to buck up for a few more days and than I can cuddle the little man until he can’t stand it any longer!
Brett & I returned to the Krankehouse today for a little drug action. I was violently dry heaving today and didn’t have any anti-nausea med’s left. My brother suggested marijuana. Apparently he has forgotten that we are in Switzerland, not Amsterdam. The rest of the morning was spent in search of Ramen Noodles or Campbell’s Chicken & Stars. Our search was in vain however. Brett thoroughly enjoyed eating both of our lunches since my once adventuresome taste buds now crave foods I enjoyed in kindergarten. I want my mommy….
What else can I bore you with? Let’s see, upon return, we don’t expect that I will be as sick as I was with the MIBG treatment from Cali. Maybe a couple of platelet transfusions and feel tired etc… but I should do pretty well. My white counts are expected to drop once again so we ask that you lather yourself in Purell before coming to visit!
By the way, Brett and I saw the post injection scans of the tumors that have invaded my body. They were lit up – bright yellow and red in the center – burn baby burn! Auf Wedersehen der Schweiz – see you again on August 12th! Chow!
Thanks again for your love and support. We can feel that the healing has begun! Mindy & Jen, my Mom told me that you were over germiciding our house yesterday - thank you. What would I do without you guys. Love to all of you. K & B
Wednesday, June 21, 2006 7:32 AM CDT *************************************** Hola! Damn, wrong language again. Brett is correct, I kept the Kranke when I left the Kranke house today (he's a bit himself however - The doctors and nurses referred to him as Mr. Hunt the entire hospital stay - he claims that he is well aware of his status in the household but he doesn't need others calling attention to it). Here is why I am cranky... Our non-smoking room is not They put warm pinapple in my dinner This country serves only mineral water - not regular water?? I am more nauseated than my first trimester of pregnancy I miss Grant terribly Ahhh.. That feels better!
Julie S., Traveling isn't the same without you. Brett wants to cut a rug with you and is sitting here rocking to "You down with Jan C O L B Y, Yeah you know me...".
Karin -you're hilarious!
New pictures....
Love to all of you. We firmly believe that your love, energy and prayers have and will continue to carry us through this.
K
Guten Tag. I have to write fast today- my battery symbol on the labtop is draining by the second and once again no adapter to plug into. So no spellcheck or humor (So really nothing different than normal). Kate had two scans yesterday and we met with our doctor, Scott. He said that we have very good uptake of the isotope and that their is no sign of liver metastisis or over exposure of the kidneys by the radiation. All excellent news. Prof Muller (cheif) came in today and echoed his sentiments. He stated that her uptake was in the upper limits of what they see with others and he expects the therapy to have "some response". They seemed quite pleased with how things went. We are thrilled but a little more cautious this time around. We have been here before. The uptake was isolated to the tumors so now we have to imagine those little bastards frying. Kate's blood counts will be monitiored when we get home -every two weeks. We are to return here in 8 weeks if her blood cells bounce back as expected for round two. We had a great experience at the hospital. We are now at a hotel and have a few days to relax before heading home. Momma bear is a little cranky today. I know she is missing her cub dearly and is eager to get back. We will try to get more info and maybe some pics if I can find an adapter again Thanks for all of the entries. B
Tuesday, June 20, 2006 6:52 AM CDT Switzerland Part Vier Kate and I broke out of the Krankhaus today and went for a walk to the coffee shop to get on line (Harder than you would think here). Kate continues to amaze me with how she hBrettas been feeling- she definately feels rough off and on but was eager to get out for a walk today. She had another scan today and we will meet them later today and see how much radiation the little bastards received. Kate is a little edgy because she spent 15 minutes writing a journal entry only to have it disappear while entering it into the site. She also is sick of me trying to force her to drink copious amounts of water. I have learned that the worse thing I can do is attempt to tell my wife what to do. Does anybody know if they have written a book on raising a spirited wife? We get out tomorrow hopefully and will be moving on to the last leg of our housing tour. I pray that our hotel room will knock our hospital room off of the top of our places to stay list. Although, our doctor did instruct the nurses to bring me a beer last night. Tough act to follow.
Brett
Monday, June 19, 2006 9:39 AM CDT Switzerland part Drei We settled into the krankhaus (sick house) or hospital this morning and realized that our room here is twice the size and ten times quieter than our previous digs. Eveything is so casual- from the docs in casual dress to their allowing Kate and I to walk by ourselves between different tests. We feel like we are truly in a good place. Kate was infused at 11:30 and than allowed to ride in the elevator with other patients and hospital staff- quite different than san fran protocol. She gets to wear her own clothes and has been feeling amazingly decent since the administration of the radioacitve peptide. This may be due to the fact that she received 1/6 the dose than before. Maria- your presence was felt this morning when O' Danny Boy came on the radio during breakfast this morning. However instead of your lovely voice, this rendition was performed by Zamphir master of the pan flute (honestly, the same Zamphir made famous by infomercials in the late 80,s) We got a good laugh but thought of you warmly anyway. More later
Brett
Sunday, June 18, 2006 5:07 AM CDT NEW PHOTOS!!!! Switz Part 2
Brett was disappointed by the lack of laughter from his last posting thus he refuses to write again...the temperment of a writer! Kidding of course...
So here we are in a wunderland and we are sitting at a Starbucks. My family will be happy to know that the coffees are far too expensive and we are here to use their WiFi.
Yesterday we took a train to France. I was very distraught to find that they rarely stamp your passport anymore! We traveled up to wine country and after much-a-do, we landed in a small "traditional" village. Although touristy, is was adorable and we loved every minute of it.
We are spending our last day BT (before treatment) lounging and resting. Brett is teasing me that not only are my Spanish, German and French skills poor so is the grasp of the English language. I am making up all kinds of words and Brett if finding great humor in all of this!
Grant is now at my Mom, Neil & Tori's. It sounds like he is having a blast! Tori can post more about this but apparently Grant has taken a strong interest in Karate!
We prob. won't write for a couple of days as tomorrow will be a busy one. Not only is Brett an amazing Father (happy father's day honey!), he continues to support me in everything I do. Brett being Brett refuses to leave me in a hospital where I don't speak the language and has informed them that he will be staying with me 24hrs/day. San Fran wouldn't let him stay in the hospital with me but he was there before I woke up in am and there when I went to bed in the pm. Cliche' as it sounds, he is truly my rock and the reason I can continue to pursue wellness while focusing on raising our little man.
Happy Father's Day to all!
K.
Later Sunday; The Karate-thing - Yesterday, during Grant's first day here this time, he went to Karate practice with Lisa and Espen. He and I were going to wait in the front-room, where we can see the workout room, and Grant was really getting into it out there. When our instructor walked by, Grant told him he wanted to do Karate like Lisa and Espen were doing "right now". So, the instructor invited him in to join the other 10-12 kids. He was kicking and punching in the air, and jumping and telling everyone he was doing Karate just like them. After he started getting really chatty, he was invited to sit out in the front room again, but he was more than willing to demonstrate his new skills upon request. No such excitement here today, it is cool and windy at the lake. But he did talk to mom and dad on the phone from Switzerland, and wished Brett Happy Father's Day! Sister-in-law, Tori
Friday, June 16, 2006 12:33 AM CDT 4 am Friday morning I know this because I just heard the church bells down the street sound for the third consecutive hour. Listening to a nice conversation on the street below our room. A young couple speaking German. She has an obnoxious squeal of a laugh and shares it way too frequently. First date I can only assume. I called down to them an hour ago using my best French sounding ‘pardon. Kate thought I sounded rather worldly but wondered why I chose this time for my first Frenchman impersonation. Switzerland is clean, meticulous, efficient, charming, and very hospitable. Basel is located dead center in Europe. It is on the border of Germany and France and the people seem to represent every culture. We got here early afternoon local time and checked into the hospital guest hostel. Very efficient. A good experience for my self admitted hotel snob wife. Very clean, orderly and very efficient. I am not sure how they fit a bed two chairs, desk and two bed stands into an 8 by 10 room. It is comfortable and we are happy to have a place to stay with all that is going on in the city this week. Art Basel is underway and is billed as the world’s largest art festival. Thus the difficulty in getting flights and a place to stay. After settling into our room Kate seemed surprisingly eager to get out and explore. I suggested she lay down while I unpacked and not surprisingly we left our room 3 hours later after a well deserved nap. We are staying next to the University so there was a lot of young people and a lot of action but the town seems surprisingly quiet (except in the middle of the night thanks to our friend’s protracted goodbye down below). The town is very quaint and neat- think old ginger bread neighborhoods. We walked down through the old town market place- beautiful and bustling with lots of folks eating and drinking at outdoor café’s. We walked down to the Rhine which is the definite heart of the city. Tons of people on the banks of the river and in the river. We ate dinner at a small café on the rivers edge. Very euro feel with a little trouble with translating the menu. Four years of Mr. Thunem’s German class between us and neither of us speak a lick of it. If a game of German bingo breaks out however we are quite prepared. Lot’s of fountains in this town -we came upon two strung out ladies who were filling a glass tube in the fountain and drinking out of it. Having lived with a few Moorhead north siders I recognized the “tube” as your standard “tobacco paraphernalia” that you can get at one of those full service record stores in town. After watching them briefly Kate determined that they were city workers testing the water quality of the fountain. You have to love this woman. Gotta go. Battery is winding down and I don’t have one of those handy “adapters” yet. Brett
Addendum: Friday 3pm: We met Brigit from the University Hospital. Efficiency is the word of the week. Everything in the hospital could be described as efficient. The radiation injection I will receive has a shorter half life than the one I received in SanFran. I will be injected early Monday am, start throwing up shortly after and be released as early as Wed. am. Once again, I will be behind a lead lined wall but this time Brett can be right in the room as long as he stays behind this shield. I am not a huge fan of the food fare in Switzerland so at least there will be little to be purged! Brett and I continue to embarrass ourselves by our lack of language. I have broken out a few words in Spanish by accident which really confuses everyone. Pretty pathetic. We miss Grant desperately but understand that he is having a good time. He played with Gracie yesterday and apparently hugged her every 30 seconds!
Wishing you great joy today! K.
Tuesday, June 13, 2006 10:54 PM CDT It's hard to believe that we leave for Switzerland TOMORROW!!!! If it were not for the fact that Brett is trying to cram five pair of my shoes in a suitcase, it wouldn't feel real.
We will be staying at the hospital's guest house as there is not a single hotel available (they charge as much as a nice hotel but without the pool)! I was whining that we will spend our 7th anniversary in a hospital when a friend reminded me that we will be in Europe, sitting on the banks of the Rhine during the World Cup! Life may not be so cruel after all.
I am having an extremely difficult time with the idea of leaving Grant for 10 days. If I were healthy, it wouldn't feel so dramatic - or maybe it would - I have nothing from which to compare. The little monkey is everything to me and I really hate the idea of missing out on his daily routine, his singing, his way of clarifying/stalling every question I ask. He will be in excellent hands but we will miss him terribly!!!!
Grant's favorite new tricks are using the potty like "a man" and shaking his booty to the chicken dance. He has also decided that it is funny to ask my permission for something and when I say no, he proceeds to do it anyway. Brett deserves extra kudos for dealing with us as Grant is every bit as stubborn as I.
We are so grateful to our family and friends for making this trip happen on such short notice. Thanks for the research, taking care of Grant, errand running, and listening to me blubber on about not wanting to leave my son! Thank you to everyone who has contributed to the fund set up - especially Paul and Lynn - it is because of you that we are able to go for this treatment on such short notice. We are eternally grateful. Thanks to Neil & Tori for helping next week, thanks to Sarah for being so flexible and great to Grant, thanks to Maria, Timmer, Conor, Cole, Karin, Steve, Sandy for all your help and a huge thanks to my Mom for picking up all the pieces in between (that includes me at times). We love you!
We will be gone for ten days and then will return for round 2 in ten weeks. Hopefully we can take Grant next time.
Love to all of you!
K, B & G
Tuesday, June 13, 2006 10:54 PM CDT It's hard to believe that we leave for Switzerland TOMORROW!!!! If it were not for the fact that Brett is trying to cram five pair of my shoes in a suitcase, it wouldn't feel real.
We will be staying at the hospital's guest house as there is not a single hotel available (they charge as much as a nice hotel but without the pool)! I was whinning that we will spend our 7th anniversary in a hospital when a friend reminded me that we will be in Europe, sitting on the banks of the Rhein during the World Cup! Life may not be so cruel after all.
I am having an extremely difficult time with the idea of leaving Grant for 10 days. If I were healthy, it wouldn't feel so dramatic - or maybe it would - I have nothing from which to compare. The little monkey is everything to me and I really hate the idea of missing out on his daily routine, his singing, his way of clarifying/stalling every question I ask. He will be in excellent hands but we will miss him terribly!!!!
Grant's favorite new tricks are using the potty like "a man" and shaking his booty to the chicken dance. He has also decided that it is funny to ask my permission for something and when I say no, he proceeds to do it anyway. Brett deserves extra kudos for dealing with us as Grant is every bit as stubborn as I.
We are so grateful to our family and friends for making this trip happen on such short notice. Thanks for the research, taking care of Grant, errand running, and listening to me blubber on about not wanting to leave my son! Thank you to everyone who has contributed to the fund set up - especially Paul and Lynn - it is because of you that we are able to go for this treatment on such short notice. We are eternally grateful. Thanks to Neil & Tori for helping next week, thanks to Sarah for being so flexible and great to Grant, thanks to Maria, Timmer, Conor, Cole, Karin, Steve, Sandy for all your help and a huge thanks to my Mom for picking up all the peices in between (that includes me at times). We love you!
We will be gone for ten days and then will return for round 2 in ten weeks. Hopefully we can take Grant next time.
Love to all of you!
K, B & G
Friday, June 9, 2006 9:56 PM CDT Foiled again...
After spending the last 36 hours searching for a flight (we finally found one), we are now unable to find a hotel due to an international art fair. Sounds great but we do need to rest our weary and wary little heads somewhere! If anyone knows of any hotels in Basel that they would recommend, please let us know! Love to you!
Place : Messe Basel Description : This international fair for 20th century art is undoubtedly the most important gathering of its kind in the world. Over 300 carefully chosen exhibitors representing the most renowned galleries in the world make this fair a temporary museum of great importance. ART Basel is the place where artists, collectors, and stars from art and culture meet.
URL : http://www.artbasel.com
Thursday, June 8, 2006 3:46 PM CDT Hello All!
Kate is a little tired today because of a phone call at 2AM this morning. Unfortunately, Kate and Brett were still awake, but fortunuately, it was the y 90 program in Switzerland with a new date available for Kate: JUNE, 19th!!! So she would leave next Thursday or Friday!!! Today's meeting at MOHPA went very well concluding that Switzerland is the definite next step. Now we are just trying to figure out how to Basel on such short notice as cheap and as comfortable as possible.
As always, Kate sends her utmost gratitude for all the support and help everyone has given in the past and continues to give. You are all amazing.
Conor Kate's favorite nephew ;)
Wednesday, June 7, 2006 1:52 PM CDT Holy Cow - Hooray - Yikes - Crap...
Switzerland just sent us an email saying that they now have an opening for July 3rd! We would leave in three weeks! Yeah - Yikes - ?!?!?!
We meet with our MOHPA doc tomorrow to lay out the stats between chemo. and y-90 (Switz treatment). I was a bit disappointed in the results sent from Switzerland but am hoping that I am not completely understanding what it said.
Assuming that we go the Switzerland route (they are known for their chocolate aren't they??), we will have a lot of scrabbling to do to pull all the details together.
We should have a final answer tomorrow!
Monday, June 5, 2006 7:07 PM CDT Now we are getting somewhere - where, we don't quite yet know. But somewhere is better than here.
Switzerland emailed Iowa last Tues. to say that we are in the study (we got the email today)! Hooray! The earliest they can accept me is in August! Boo!
Expert 1: Too long to wait. Do chemo first.
Expert 2: Chemo. doesn't work well on this tumor. Use it as a last ditch effort.
We are hearing conflicting opinions but at least we have options & are heading somewhere.
Brett & I are up and down with our emotions. I think some fear has somehow sneaked into our lives and we don't like it.
Grant is rock'n! He loves to sing and dance and talks up a storm! Last week, he told our friend Alley that she has a really big belly (she is pregnant!). She told him that it was because she has a baby growing inside of her. Grant patted her tummy and sang Rock-a-bye Baby to their little one! He has also mastered the "L M N O P" part of the alphabet - before it sounded as though they were all one letter. He repeats absolutely everything we say including aroraborealis! WoW!
Thank you Joe for the beautiful and AWESOME CD! Of course I sobbed when I listened to it - especially the song you wrote for Mom & Dad! I know I brag about my family all of the time but they are each so talented and inspirational in their own way! I love you all!
We wish you all great love today!
Sunday, June 4, 2006 9:53 PM CDT I used to have a morsel of respect for MN Gov. Tim Pawlenty but not after his speech at the Repub's convention last week. I share this with you because it is so incredibly offensive. (most of you would probably prefer that I keep to the medical updates only but this is too ridiculous not to post a comment.)
From Kare 11 website: Gov. Tim Pawlenty collected the Republican Party's endorsement for a second term on Friday, telling party members that a Democratic governor would be their "worst nightmare."
"Now I know I may not be in some of your wildest dreams but I can tell you what your worst nightmare is," Pawlenty told delegates at his party's state convention. "It's one of the big spendin', tax raisin', abortion promotin', gay marriage embracin', more-welfare-without-accountability lovin', school-reform resistin', illegal-immigration supportin' Democrats for governor who think Hillary Clinton should be president of the United States."
I would think people from all parties would be disgusted by this polarized stance. But, when I read his statement, I guess I do embrace civil rights for all. I think the recent school-reforms have been counterproductive; I don't believe it should be a felony to seek a better life; TP is the one raisin' our taxes through property tax increases and the like - finally,she doesn't have my vote yet, Hillary very well may make an excellent president. I can certainly think of worse TP.
We should hear from Switzerland tomorrow.
Love to all of you! K.
Friday, June 2, 2006 1:00 PM CDT Many of you have been calling asking what you can do to help - We're not good at asking but here is one idea of how to help me: Vote against Mark Kennedy this November!!! Uggh! I'm not even asking that you vote for Amy Klobchor (ok, I butchered her name but she is a seemingly good choice)! Vote Green, vote Libertarian, write in your own name and vote for yourself... just don't vote for Mark Kennedy!! Notice I didn't say vote Independent as MK says that he is the real independent candidate now - what?! When he ran for Congress, he loved the current administration, now he is bad mouthing them - nothing new in politics but his politics disgust me!
Ahh.. that feels better. Thanks for the notes and calls.
Much love to all of you - love your little ones ferociously.
K.
Thursday, June 1, 2006 4:59 PM CDT I was just about to say, "curiousity killed the cat" to let you know that we called for our results today but I guess that would be a poor choice of words now wouldn't it?
Our terrific nurse called and started with "I don't want to tell you..." As you can imagine, the results are not good. I will just tell you that there is a reason for my extreme fatigue and for the high tumor marker.
Becky (our nurse) called a "specialist" at MD Anderson at my request today. We are waiting for his response. Still no word from Switzerland. I will now meet w.Dr. S. on the 8th - he wanted to block out an hour for my appt.
We will let you know once we hear about a potential plan. Thanks for your love and prayers.
I ask that you please include the Sirjord family in your prayers tonight. Stu & Mindy's nephew passed away Tuesday at the very young age of 17. I love you guys and our hearts are with you.
K.
Wednesday, May 31, 2006 9:04 PM CDT Thanks for the notes and many acts of kindness to everyone!
Thank you to Karin who took me to my CT appt. this a.m., Alley for playing with Grant while we were gone and to Sandy for helping this afternoon! (I hate to mention names as there are so many people to thank over these past coulple weeks - year)
We didn't call for our results this afternoon - we will probably call tomorrow. Brett is home with me in the a.m so we will do it together. Keep your fingers crossed. I am hopeful that there isn't a significant change in the scan. The radiologist came in to introduce himself and I discovered that he is the brother of a friend of mine - it is truly a small world! I asked if he saw any major changes and he said he would have to compare it to the other scans to be able to tell. I took this as a good sign that there was nothing glaring.
Thank you to everyone for the fantastic help, love and prayers. I am still terribly behind in sending out personal thank you notes but please know that Brett and I are so appreciative of the mowing, grocery shopping, food, pedicure :) etc.......
I ask that you please include the Sirjord family in your prayers tonight. Stu's nephew passed away yesterday at the very young age of 17. I love you guys and our hearts are with you.
K.
Thursday, May 25, 2006 5:11 PM CDT Quick update -
Kate's white cells have dropped again. We are checking into reasons. We ask that healthy people only drop by for visits.
Kate's tumor marker went up from 300's to 1150. Looks correct this time. F***.
Because she hasn't been feeling well and has been so tired, we are scheduled for a CT on the 31st. We will see our Oncologist on the 7th of June and hope to have the final decision from Switz. at that time. If still no response, we will begin chemo and will count on winning in the margins!
Please pray for strength, energy and clarity as we make the decision to do chemo or the clinical trial in Switz.
Thank you and Bless you all.
Tuesday, May 23, 2006 9:56 PM CDT Hi everyone!
Sorry for the lack of updates but our lives have been pretty boring these last couple of weeks - which is a nice break!
Grant & I are in Nisswa enjoying the weather & company. I am pretty certain that this has been the best week of Grant's life (he may only be two but he has had some pretty awesome experiences already!)! He is nothing short of giddy to spend time with his cousins, Lisa and Espen and today he was able to ride in a Bobcat tractor! Later, two dump trucks came and unloaded dirt in my mom's yard. To add to the excitement, the tractor broke down by the lake and a large tow truck had to come and pull it up the hill -Finally, the Bobcat driver accidentally hit the sewer line and broke it which led to all kinds of digging, hammering and drilling. Grant thought he was in heaven! After today, I feel confident that Grant is over his princess stage!
I have been pretty tired as of late so coming here has been a wonderful break. My family is taking excellent care of us and Grant is happy to spend time w/his aunt Tori, Uncle Neil and cousins. Namma Namma and I are old hat so he wants little to do with us! I can't believe that he is the same kid who wouldn't leave my side a few short months ago!
Other than that, we are still waiting to hear from Switzerland. I am biding my time by beating my mom at cards are reading a few good books. My parents devour books so they have quite the library from which to choose.
I have added the link to Charlie Bendell's Caring Bridge site. He is quite the little man! Please continue to keep him in your prayers as he begins chemo. tomorrow.
Happy Birthday Kate, Bex, Solee, Neil and Steve!
So many of you have done wonderful things for us these last several weeks - I apologize that I am tardy in sending out thank you's. Please know that Brett, Grant & I are eternally grateful for all that you have done. I also have many calls and letters to return. We will get back to you - I promise (we were horrible at this prior to the "c", now we are even worse)!
I wish all of you a fantastic Memorial weekend! Peace, K.
Friday, May 19, 2006 4:19 PM CDT Friday, May 19, 2006 3:54 PM CDT
Please continue your prayers for Charlie - I won't reveal his parent's name because I don't have their permission to do so - but please keep them in your prayers too. His tumor is cancer. Thankfully it is a highly curable type and it doesn't appear to have spread. I can't imagine what they must be going through right now so please pray for Charlie to be cured and for his family to have strength, love and support surround them.
My sister Sarah is coming from Seattle so Grant & I will head up to my Mom's (my brother and family live in a house attached). I am sure Grant will love it! Brett will stay home and try to catch up on some yard work and some wiring projects - one of his closest friends will be in town so I am sure there will be a lot of late nights and a few beers emptied. I just hope they finish the wiring before they finish the beers!
Happy birthday Barb & Mary! We love you both!
K.
Thursday, May 18, 2006 2:06 PM CDT Little Charlie should have had his surgery today. Please continue to keep him in your prayers until we have heard an update.
Grant is doing well - he is outside playing with our "mother's helper" (no, I don't mean Vodka), Sarah. He really adores her and it is going well. It was my niece, Kelsey's last day on Friday. We miss her already but Grant seems to be adjusting nicely. Grant has quite the imagination already! Yesterday, Grant pointed to a car and said, "look Mommy! A tiger!" I asked where and Grant said indignantly, "Just pretend Mommy!" He is Mr. Personality!
Many blessings to all of you, K.
Sunday, May 14, 2006 9:58 AM CDT Please continue your prayers for little Charlie. His surgery has been post-poned until Wed. so that they may gather more info. Thank you. *********************************************** Happy Mother's Day to all Mom's and Mom-like influences out there!
This morning, I received an email from a friend of mine whose son in 1 1/2 years old. Lat week she found a lump on her son's tailbone, saw a pediatric oncologist and now they want to do surgery right away to see what this is all about. The surgery will take place tomorrow, Monday. I am asking everyone I know to please take a moment on Monday to say a little prayer that Charlie's results will be benign and that he will be completely healthy. As most of you know, I strongly believe in the power of prayer, collective thoughts and energy. Please kkep little Charlie on your mind tomorrow and think healthy, happy thoughts.
Thank you!!!
K
Wednesday, May 10, 2006 7:26 PM CDT We found this on-line today. This algorithm diagrams some potential treatment options. There are a couple of things on this that we have not seen before (and don't know that it is relevant either).
Our info. should be sent to Switzerland on Friday and we are told it takes approx. two weeks to hear their decision. We need SOMETHING so that we can hold on long enough for the trial drug at Duke to be released for treatment (and shown to work).
HOPE HOPE HOPE HOPE HOPE HOPE HOPE HOPE HOPE HOPE HOPE
Monday, May 8, 2006 9:14 PM CDT Big news in the Mortenson household - Grant successfully used the "big boy potty" for the second day in a row! He is incredibly proud and wants to show everyone his good work!
No news medically - Iowa called today to tell me that they have misplaced all of my scans and asked that I send them new ones. No commentary necessary.
Thank you again for the fantastic meals - It has really allowed me to focus my "up" time on Grant. We are so grateful for the support and love we are receiving from all of you!
Please keep G.W. (the man cited in the original MIBG treatment studies) in your prayers. The "c" is back and has invaded his bones. Gerry, I know you read this so please know we are thinking of you and that YOU WILL BEAT THIS THING!!!!
Happy Birthday to Gerry, Jayden & Kelsey!!!! May 9th is certainly a popular day!!!
Much love to everyone, Kate
Friday, May 5, 2006 9:18 PM CDT Interesting show on NOW (PBS) tonite. Here is some info. from their website. Brett & I thankfully have great insurance coverage - but we didn't KNOW that it was good until we were in the throws of this battle. Many insurance plans have a maximum lifetime coverage amount. My niece, as an example, has coverage up to one million dollars. At the young age of 25 she had almost reached her maximum. It is imperative that you do your homework as you choose your insurance plan. In 8 months, my bills were over $200,000 (mostly covered by insurance) - you can see how quickly you could reach you max. coverage amt. If you don't know how much you are covered, ask your HR person or call your insurance company. Here is a summary of the story we saw on PBS tonite:
It's "Cover the Uninsured Week," a series of events across the country put forth by a bi-partisan coalition in Washington D.C. pushing for health insurance reform. Some 45 million Americans do not have health insurance coverage despite the fact that many of them have jobs.
In the coming days the Senate will debate legislation that, if passed, would radically overhaul insurance regulations across the country.
Proponents say the legislation could help close to a million people gain access to health insurance. Those against it say it could hurt consumers in many ways, leaving some stuck with bare bones policies that offer virtually no coverage at all.
One of the cases NOW profiles is that of Dana Christensen, who purchased a health insurance policy with her husband Doug thinking they had bought into an excellent plan. "I thought it was an outstanding policy. But it wasn't until we went to use it that we found out it didn't cover what we were promised it covered," Christensen told NOW.
After Doug became ill with bone cancer, the medical bills quickly piled up and the couple found themselves overwhelmed as their insurance policy paid only a fraction of the costs.
She says Doug was turned away from a hospital in excruciating pain because their insurance had maxed out. The couple found themselves personally owing almost a half a million dollars in medical bills. A year and a half after his diagnosis, Doug lost his battle with cancer.
Dana sued Mega Life & Health Insurance Company for fraud and eventually settled for 1.7 million dollars. Mega offered more if she would sign a confidentiality agreement. She refused, and talked to NOW. (from PBS.org)
Friday, May 5, 2006 4:24 PM CDT Hi - I am on hope w/Uof Iowa as I write. In meantime - here is some info on Darfur if you would like to read... Darfur conflict From Wikipedia, the free encyclopedia Jump to: navigation, search This article documents a current event. Information may change rapidly as the event progresses. The country of SudanThe Darfur Conflict is an ongoing conflict in the Darfur region of western Sudan, mainly between the Janjaweed, a militia group recruited from local Arab tribes, and the non-Arab peoples of the region. The Sudanese government, while publicly denying that it supports the Janjaweed, is providing arms and assistance and has participated in joint attacks with the group. The conflict began in February 2003.
The conflict has been described by the Western media as "ethnic cleansing" and "genocide." In September 2004, the World Health Organization (WHO) estimated 50,000 deaths in Darfur since the conflict's beginning, mostly by starvation. In October, the organization's head gave an estimate of 71,000 deaths by starvation and disease alone between March and October 2004. While a recent British Parliamentary Report estimates that over 300,000 people have already died, [1] the United Nations estimates that 180,000 have died in the past eighteen months of the conflict. [2] More than 1.8 million people had been displaced from their homes. Two hundred thousand have fled to neighboring Chad.
Although the large majority of resultant refugees are non-Arab black Africans fleeing Arab Janjaweed attacks, [3] there are also Arab victims and non-Arab perpetrators. In addition, both sides are largely black in skin tone, and the distinction between "Arab" and "non-Arab" common in Western media is heavily disputed by many people, including the Sudanese government. Moreover, these labels have been criticized for describing the conflict as one of purely racial motivations, where some experts instead attribute the causes to competition between farmers and nomadic cattle-herders who compete for scarce resources. It is clear, however, that the targeting of certain of these ethnic groups has entailed various crimes against humanity. Many of these fall under the category of genocide, according to international law and regardless of the complexity of their racial relationship. This violence has forced people to flee into the desert, on the order of hundreds of thousands, and more recently millions. Accurate numbers of dead have been difficult to attain, partly because the Sudanese government threatens Western journalists with death sentences if they are caught filming the genocide.
In the summer of 2004, the U.S. Secretary of State, Colin Powell, travelled the refugee camps of Darfur with the Sudanese foreign minister. A team of American investigators stayed behind to interview people in the camps, and later, Powell testified before the U.S. Congress that genocide was being perpetrated in Darfur. The Sudanese government has denied claims that it is involved, though, Powell and his team found that the government is clearly and directly involved in committing the genocide. In addition to the Bush Administration, many others, such as Senator John Kerry also denounced it as a genocide. [4] In July of 2004, the U.S. Congress also unanimously declared the actions of the Sudanese government and their proxy militias officially as a "genocide". [5]
The UN, prior to the 2004 Indian Ocean earthquake, called the Darfur conflict the world's worst current humanitarian crisis. At this time, estimates of the dead in Darfur are on the order of ten times the number of deaths in the Indian Ocean earthquake. However, intervention by the UN is unlikely as the governments of key members of the Security Council state they are pragmatically and ideologically constrained in their ability to respond to the conflict. The Russian government, with its weakened economy, struggles to meet its internal security dilemmas regarding its persistent border conflicts. United States force deployments in Iraq and elsewhere make intervention a difficult proposition. The United States also faces difficulty stemming from its commitment to the peace process ending the Second Sudanese Civil War, which it fears may be derailed. Finally, setting up No-Fly Zones is logistically difficult considering the remoteness of Darfur, the lack of infrastructure in potential airbase neighbors, and the issue of airspace rights for flyovers to Darfur from other neighbors.
Moreover, in both of these nations, along with Britain and France, a strong lobby exists opposed to intervention in countries whose internal strife is not clearly related to the nation's own interest (America and France having suffered demoralizing losses in Vietnam, as well as in Somalia and Algeria, respectively). The lack of capable foreign peacekeepers during the Rwanda and Liberia crises is a more recent example.
Those who have committed war crimes and crimes against humanity in the region on all sides of the conflict will most likely be held accountable. However, it is currently undecided whether prosecution will commence via the International Criminal Court, or via a provisional tribunal, such as the one used after the ethnic conflicts in Rwanda and in the Balkans. The Bush administration currently opposes the ICC option and supports the special tribunal mechanism.
Dead animals lie in the middle of a burned and looted village in DarfurContents [hide] 1 Origins of the conflict 2 Course of the conflict 2.1 July 2004 2.2 August 2004 2.3 September 2004 2.4 October 2004 2.5 November 2004 2.6 January 2005 2.7 March 2005 2.8 April 2005 2.9 May 2005 2.10 July 2005 2.11 August 2005 2.12 September 2005 2.13 October 2005 2.14 November 2005 2.15 December 2005 2.16 February 2006 2.17 May 2006 3 References 4 See also 5 External links
[edit] Origins of the conflict The conflict concerns two distinct groups in the diverse Darfur population; non-Arab black peoples like the Fur, Masalit, and Zaghawa, and Arab tribes collectively termed Baggara (also black by the standards of most non-Africans), who settled the region from about the 13th century onwards. Both groups are Muslims. However, relations between the two groups have been tense; the pre-colonial Fur kingdom regularly clashed with the Baggara, particularly the Rizeigat. Moreover, before the 20th century, Darfur housed the slave trade and Fur and Arab slavers competed to enslave the Bahr el Ghazal regions. The two groups also have differing economic needs, which has led to clashes. The Fur and Masalit are agriculturalists. The Arabs and Zaghawa are nomadic herdsmen. This has led to disputes over access to land and surface water.
There has been a series of military dictatorships since 1958(1950), and following independence in 1956, the Sudanese government acquired a strong Arab character. The First Sudanese Civil War, between the Muslim government and the mostly non-Muslim population of the southern Sudan began in 1955 and ended with the 1972 Addis Ababa Accords. In 1983, the Second Sudanese Civil War ensued when the president declared Sharia law in the south. Peace conferences in 2005 ended the 21 year civil war and produced an agreement under which state revenues — oil money in particular — would be shared between the government and the southern rebel groups.
In early 2003, two local rebel groups — the Justice and Equality Movement (JEM) and the Sudan Liberation Movement (SLM) — accused the government of oppressing non-Arabs in favor of Arabs. The SLM is generally associated with the Fur and Masalit, while the JEM is associated with the Zaghawa of the northern half of Darfur.
Hassan al-Turabi was put in jail in March 2004 in connection with an alleged coup plot linked with JEM, [6] [7] but denies supporting JEM. [8] However, al-Turabi blames the government for "aggravating the situation." The government dropped charges on December 3, 2004.
[edit] Course of the conflict The conflict in Darfur began in February 2003 when JEM and SLM rebels attacked government forces and installations. The government, caught by surprise, had very few troops in the region, and — since a large proportion of the Sudanese soldiers were of Darfur origin — distrusted many of its own units; its response was to mount a campaign of aerial bombardment supporting ground attacks by an Arab militia, the Janjaweed, recruited from local tribes and armed by the government. (The government, however, denies any connection to the Janjaweed militia and calls them "thieves, gangsters and crooks." [6]) While the conflict has a political basis, it has also acquired an ethnic dimension in which civilians were deliberately targeted on the basis of their ethnicity, and an economic dimension related to the competition between pastoralists (generally Arab) and farmers (generally non-Arab) for land and water.
In 2004, Chad brokered negotiations in N'Djamena, leading to the April 8 Humanitarian Ceasefire Agreement between the Sudanese government and JEM and SLM. A group splintered from the JEM in April — the National Movement for Reform and Development — which did not participate in the April cease-fire talks or agreement. Janjaweed and rebel attacks have continued since the ceasefire. The African Union (AU) formed a Ceasefire Commission (CFC) to monitor observance of the April 8th ceasefire.
A United Nations observer team reported that non-Arab villages were singled out while Arab villages were left untouched:
The 23 Fur villages in the Shattaya Administrative Unit have been completely depopulated, looted and burnt to the ground (the team observed several such sites driving through the area for two days). Meanwhile, dotted alongside these charred locations are unharmed, populated and functioning Arab settlements. In some locations, the distance between a destroyed Fur village and an Arab village is less than 500 meters. (UN Interagency Report cited below, 25 April 2004) The Janjaweed are also said to have torched dozens of mosques and torn up and defecated on copies of the Qur'an (The Economist, May 15, 2004).
Both sides have been accused of committing serious human rights violations, including mass killing, looting, and rapes of the civilian population. However, the better-armed Janjaweed quickly gained the upper hand. By the spring of 2004, several thousand people — mostly from the non-Arab population — had been killed and as many as a million more had been driven from their homes, causing a major humanitarian crisis in the region. The crisis took on an international dimension when over 100,000 refugees poured into neighbouring Chad, pursued by Janjaweed militiamen, who clashed with Chadian government forces along the border. More than 70 militiamen and 10 Chadian soldiers were killed in one gun battle in April.
The scale of the crisis has led to warnings of an imminent disaster, with United Nations Secretary-General Kofi Annan warning that the risk of genocide is frighteningly real in Darfur. The scale of the Janjaweed campaign has led to comparisons with the Rwandan Genocide, a parallel hotly denied by the Sudanese government. Independent observers have noted that the tactics, which include dismemberment and killing of noncombatants and even young children and babies, are more akin to the ethnic cleansing used in the Yugoslav Wars but have warned that the region's remoteness means that hundreds of thousands are effectively cut off from aid. The Brussels-based International Crisis Group has reported that over 350,000 people could potentially die as a result of starvation and disease. [9] The Genocide Intervention Network has been raising private donations to fund peacekeepers from the African Union in Darfur.
[edit] July 2004 In early July 2004, Annan and then-United States Secretary of State Colin Powell visited Sudan and the Darfur region, and urged the Sudanese government to stop supporting the Janjaweed militias. Annan described the trips as constructive.
The African Union and European Union have sent monitors [10] (as of 5 July 2004) to observe the cease-fire signed on 8 April 2004; [11] however, the Janjaweed's attacks have not stopped, as noted by the United States [12] and more recently Human Rights Watch. [13]
According to the BBC in July, [14] analysts estimate that at least 15,000 soldiers would be needed to put an end to the conflict.
On 23 July 2004, the United States Senate and House of Representatives passed a joint resolution declaring the armed conflict in the Sudanese region of Darfur to be genocide and calling on the Bush administration to lead an international effort to put a stop to it.
On 30 July, the United Nations gave the Sudanese government 30 days to disarm and bring to justice the Janjaweed, in UN Security Council Resolution 1556; if this deadline is not met in 30 days, it "expresses its intention to consider" sanctions. [15] The Arab League asked for a longer term and warned that Sudan must not become another Iraq. Resolution 1556 also imposed an arms embargo on the Janjaweed and other militia. [16]
From the Sudanese government's point of view, the conflict is simply a skirmish. The Sudanese president, Omar Hassan al-Bashir, said, "The international concern over Darfur is actually a targeting of the Islamic state in Sudan." Sudan has warned Britain and the United States not to interfere in the internal affairs of the East African country saying it will reject any military aid, while asking for logistic support.
[edit] August 2004 Destroyed villages as of August 2004 (Source: DigitalGlobe, Inc. and Department of State via USAID)In August 2004, the African Union sent 150 Rwandan troops in to protect the ceasefire monitors; however, "their mandate did not include the protection of civilians." [17] Rwandan President Paul Kagame declared that "if it was established that the civilians are in danger then our forces will certainly intervene and use force to protect civilians"; however, such an effort would certainly take more than 150 troops. They were joined by 150 Nigerian troops later that month. [18] [19]
Peace talks, which had previously broken down in Addis Ababa on July 17, were resumed on August 23 in Abuja. The talks reopened amid acrimony, with the SLA accusing the government of breaking promises [20] that it made for the little-respected April ceasefire.
The UN's 30 day deadline expired on August 29, after which the Secretary General reported on the state of the conflict. According to him, the situation "has resulted in some improvements on the ground but remains limited overall". In particular, he notes that the Janjaweed militias remain armed and continue to attack civilians (contrary to Resolution 1556), and militia disarmament has been limited to a "planned" 30% reduction in one particular militia, the Popular Defense Forces. He also notes that the Sudanese government's commitments regarding their own armed forces have been only partially implemented, with refugees reporting several attacks involving government forces. [21] He concludes that:
Stopping attacks against civilians and ensuring their protection is the responsibility of the Government of Sudan. The Government has not met this obligation fully, despite the commitments it has made and its obligations under resolution 1556 (2004). Attacks against civilians are continuing and the vast majority of armed militias has not been disarmed. Similarly, no concrete steps have been taken to bring to justice or even identify any of the militia leaders or the perpetrators of these attacks, allowing the violations of human rights and the basic laws of war to continue in a climate of impunity. After 18 months of conflict and 30 days after the adoption of resolution 1556 (2004), the Government of Sudan has not been able to resolve the crisis in Darfur, and has not met some of the core commitments it has made. and advises "a substantially increased international presence in Darfur" in order to "monitor" the conflict. However, he did not threaten or imply sanctions, which the UN had expressed its "intention to consider" in Resolution 1556.
[edit] September 2004 On September 9, 2004, then-US Secretary of State Colin Powell declared to the US Senate that genocide was occurring in Darfur, for which he blamed the Sudanese government and the Janjaweed. This position was strongly rejected by the Sudanese foreign affairs minister, Najib Abdul Wahab. The United Nations, like the African Union and European Union, have not declared the Darfur conflict to be an act of genocide. If it does constitute an act of genocide, international law is considered to allow other countries to intervene.
IDP camp near Nyala, South DarfurAlso on September 9, 2004, the US put forward a UN draft resolution threatening Sudan with sanctions on its oil industry. [22] This was adopted, in modified form, on September 18, 2004 as Resolution 1564 (see below.)
On September 13, 2004, WHO published a Darfur mortality survey, which was the first reliable indicator about deaths in Darfur. It reported that 6,000–10,000 people were dying each month in Darfur. Many were related to diarrhoea, but the most significant cause of death was violent death for those aged 15–49. The Darfur mortality rates were significantly higher than the emergency threshold, and were from 3 to 6 times higher than the normal African death rates. [23]
On September 18, 2004, the United Nations Security Council passed Resolution 1564, pressuring the Sudanese government to act urgently to improve the situation by threatening the possibility of oil sanctions in the event of continued noncompliance with Resolution 1556 or refusal to accept the expansion of African Union peacekeepers. [24] Resolution 1564 also established an International Commission of Inquiry to look into human rights violations, and to determine whether genocide was occurring. [25] In the wake of this resolution, the peacekeeper force was to be expanded to 4,500 troops. [26]
On September 30, 2004, during the first of three U.S. presidential debates, Jim Lehrer, the moderator, asked why neither candidates had discussed committing troops to Darfur. Senator John Kerry replied that "one of the reasons we can't do it is we're overextended," but agreed that he'd use American forces "to some degree to coalesce the African Union." President Bush cited aid committed to the region and agreed that action should be taken through the African Union. Both candidates agreed that what was happening in Darfur was genocide. [27]
[edit] October 2004 On October 15, 2004 World Health Organization official David Nabarro estimated that 70,000 people had died of disease and malnutrition in Darfur since March.
On October 17, 2004 in a meeting between leaders of Libya, Sudan, Egypt, Nigeria and Chad, the idea of foreign intervention was rejected. They stated that they believe it to be a purely African matter. Egyptian presidency spokesman Magued Abdel Fattah said that the international community should, "provide Sudan with assistance to allow it to fulfil its obligations under UN resolutions (on Darfur) rather than putting pressure on it and issuing threats".
The United States transported Nigerian soldiers on October 28The African Union had expected to have 3,000 additional troops in place in the region sometime in November, but cited lack of funds and 'logistical difficulties' in delaying this deployment, waiting on the AU's Peace and Security Council to meet on October 20 and decide on the expanded duties and numbers of the force. It was decided that these AU troops, from both Nigeria and Rwanda, will be deployed by October 30.
The United Nations pledged $100 million dollars to support the force, about half of the $221 million cost to keep them deployed for a year. The European Union mobilised the remainder, an additional EUR 80 million on October 26 from their African Peace Facility to support the deployment and operations of the 3144-strong AU observer mission which will monitor the implementation of the cease-fire agreement. [28]
Peace talks between Sudan and Darfur rebels were scheduled to resume on October 21 in Abuja, Nigeria. However, rebels showed up late and the talks did not begin until October 25. Two more rebel groups now want in on the negotiations, and an existing cease-fire agreement is considered shaky. The talks are still in progress, but a humanitarian agreement is expected to be hammered out during the course of the talks.
[edit] November 2004 A village health post destroyed by a Jingaweit militia attack.On November 2 the United Nations reports that Sudanese troops have raided the Abu Sharif and Otash refugee camps near Nyala in Darfur, moving a number of inhabitants and denying aid agencies access to the remaining inhabitants inside. [29] Meanwhile, the Abuja talks continued, with attempts made to agree on a no-fly zone over Darfur in addition to a truce on land and a disarmament of the militias. [30]
A third UN resolution is being considered, calling for a speedy end to the conflict. [31]
On November 9 the Sudanese government and the two leading rebel groups, the Justice and Equality Movement (JEM) and the Sudan Liberation Movement (SLM), signed two accords aimed toward short-term progress in resolving the Darfur conflict. The first accord established a no-fly zone over rebel-controlled areas of Darfur—a measure designed to end the Sudanese military's bombing of rebel villages in the region. The second accord granted international humanitarian aid agencies unrestricted access to the Darfur region. The accords were the product of African Union sponsored peace talks in Abuja that began October 25. Delegates stated that a later round of negotiations expected to begin in mid-December would work on a longer-term political accord. The talks may have produced the breakthrough accords because of a looming meeting of the UN Security Council, which many expected would have imposed oil sanctions on the Sudanese government if progress had not been made. [32] [33] [34]
Despite the November 9 accords, violence in Sudan continued. On November 10—one day after the accords—the Sudanese military conducted attacks on Darfur refugee villages in plain sight of UN and African Union observers. [35] [36] On November 22, alleging that Janjaweed members had refused to pay for livestock in the town market of Tawila in Northern Darfur, rebels attacked the town's government-controlled police stations. The Sudanese military retaliated on November 23 by bombing the town. [37]
[edit] January 2005 The International Commission of Inquiry on Darfur hand their report to the Secretary General on January 25. [38] The Commission found that the Government of the Sudan and the Janjaweed are responsible for serious violations of international human rights and humanitarian law amounting to crimes under international law, however the government of Sudan had not pursued a policy of genocide in Darfur. The Commission identified 51 individuals responsible for the violation of human rights and recommended immediate trial at the International Criminal Court.
[edit] March 2005 IDP campOn March 7, UN Secretary General Kofi Annan spoke to the UN Security Council requesting that the peacekeeping force in Darfur be increased to support the 2000 African Union troops already deployed. [39] A resolution for the deployment of an additional 10,000 peacekeepers has been delayed by the failure of the Security Council to agree on the mechanism to be used to try war criminals and the application and extent of sanctions. [40] A number of Security Council members want war criminals to be tried by the International Criminal Court, however the United States refused to support that proposition. An African-run tribunal has been proposed as a countermeasure, and proposals have been made for trials to be held in Tanzania and Nigeria. [41] The current resolution has also been criticized, as it is unclear as to whether the peacekeepers will be deployed to Darfur or to monitor peace in the south of Sudan. [42] On March 24 a peacekeeping force was approved to monitor peace in the south of Sudan, however the Security Council still remains deadlocked over Darfur. [43]
On March 29 Security Council Resolution 1591 was passed 11–0. [44] The Resolution strengthened the arms embargo and imposed an asset freeze and travel ban on those deemed responsible for the atrocities in Darfur. It was agreed that war criminals will be tried by the International Criminal Court. [45]
The United Nations released a new estimate of 180,000 who have died as a result of illness and malnutrition in the 18 months of the conflict. It has not attempted to estimate the number of violence-related deaths. [46]
[edit] April 2005 On April 5 it was reported that the UN has given the ICC the names of fifty-one people suspected of war crimes. The list may include high government officials of Sudan. The Sudanese Government has said it will not hand over the suspects.
The sealed list, presented to the International Criminal Court on Tuesday, was drawn up following an investigation by the UN into claims of killings, torture and rape committed by Government forces and militias in the Darfur region. Sudanese President Omar al-Bashir, backed by huge protests against the UN in Sudan's capital of Khartoum, snubbed the UN resolution passed on March 29 to bring the suspects to trial before the court, adding that he "shall never hand any Sudanese national to a foreign court".
On April 29 it was reported [47] that the administration of U.S. President George W. Bush had forged a "close intelligence partnership" with the Sudanese government despite their presence on the U.S. list of state sponsors of international terrorism and the declaration of genocide in Darfur by that administration's former Secretary of State, Colin Powell.
[edit] May 2005 IDP mother and malnourished child in North DarfurLibyan leader Muammar Gaddafi has somewhat championed the cause of African unity. This sentiment has led him to invite the leaders of Sudan, Nigeria, Egypt, Chad and Eritrea to a summit in Tripoli regarding the conflict in Darfur.
The two main rebel groups in Darfur, the Sudan Liberation Movement and the Justice and Equality Movement, announced they wanted to resume peace talks. Previous negotiations were to be disbanded in favor of new dialogue hoping to solve their differences.
It seems that a possible hinge of the negotiations is compliance or refusal of handing over war crime suspects to organizations such as the International Criminal Court in The Hague.
Medecins Sans Frontieres doctor Paul Foreman was arrested by Sudanese authorities over the publication of a report detailing hundreds of rapes in Darfur. [48]
Claims began to surface that the Bush administration's noticeable toning down of its description of the situation in Sudan - it stopped calling the Darfur conflict a genocide, and claimed that United Nations death toll estimates may be too high - was due to increased co-operation from Sudanese officials towards the War on Terrorism. The claim asserted that Major General Salah Abdallah Gosh who is said to have been involved in training the Janjaweed, was flown to Washington for high-level talks with his United States counterparts, related to global terrorism.
[edit] July 2005 Security in the region is improving, according to the commander of the African Union peacekeeping force. [49] There have been no major conflicts since January, and the numbers of attacks on villages has been dropping. There are currently around 3,000 troops there to keep the peace, and more are due to arrive in the coming months, expecting to reach 7,000 troops in September. In keeping with a decision made by the Peace and Security Council, Nigeria sent a battalion of 680 troops on Wednesday, July 13, 2005 with two more coming soon thereafter. Rwanda will send a battalion of troops, Senegal, Gambia, Kenya and South Africa will send troops as well. Canada is providing 105 armoured vehicles, training and maintenance assistance, and personal protective equipment in support of the efforts of the African Union Mission in Sudan (AMIS). [50]
On July 10, Ex-rebel leader John Garang was sworn in as Sudan's vice-president. [51] A new constitution was adopted, and all parties should be represented more fairly. The United States Deputy Secretary of State Robert Zoellick has applauded the political changes and the improving security. Kofi Annan and South African President Thabo Mbeki watched the ceremony.
[edit] August 2005 On August 1, newly-elected Sudanese vice-president John Garang, a former leader of the Sudan People's Liberation Army (SPLA), who was seen by many to be a crucial element of a Sudan that is free of genocide, died in a helicopter crash. [52] This has sparked renewed concerns [53] throughout the international community, of Sudan's ability to unite in the face of genocide.
The long-term implications of Garang's death are still unclear; and, despite the recently improved security, talks between the various rebels in the Darfur region are going slowly, with no sight of a final peace agreement.
[edit] September 2005 On September 15, a series of African Union mediated talks began in Abuja, Nigeria. Representatives of the Sudanese government and the two major rebel groups are participating in the talks, however the Sudan Liberation Movement faction refused to be present and according to a BBC reporter the SLM "will not recognise anything agreed at the talks". [54]
[edit] October 2005 After a government-supported Arab militia attacked the Aro Sharow refugee village on September 28, killing at least 32, the African Union on October 1 accused both the Sudanese government and rebels of violating the ceasefire agreement. [55] [56] Associated Press reports the African Union as condemning the government's "acts of 'calculated and wanton destruction' that have killed at least 44 people and displaced thousands over two weeks." [57]
On October 9, a rebel group abducted 18 members of an African Union peacekeeping team, but released most of them after negotiations. [58] [59]
Following an increase in fighting in the region, on October 13 the UN announced that it will withdraw all non-essential staff from Darfur. West Darfur is reportedly too dangerous for aid-agencies to operate. [60]
[edit] November 2005 Attacks on African Union Peacekeepers by rebels has led to the Sudanese government approving the deployment of 105 Grizzly armored personnel carriers donated by Canada to aid African Union peacekeeping forces in the western region of Darfur. [61]
The seventh round of peace talks are scheduled to start on November 21.
[edit] December 2005 An attack on the Chadian town of Adre near the Sudanese border led to the deaths of three hundred rebels. Sudan was blamed for the attack, which was the second in the region in three days. [62] The escalating tensions in the region led to the government of Chad declaring its hostility toward Sudan and calling for Chadian citizens to mobilise themselves against the "common enemy". [63] (See Chad-Sudan conflict)
On December 24th, The Congress of the United States rejected Condoleezza Rice's request to restore $50 million in aid to the African Union that human rights groups say had been cut from the budget in November.
[edit] February 2006 On February 3, 2006, as the United States began its month-long presidency of the United Nations Security Council, the U.S offered a motion to begin plans to send UN peacekeepers to Darfur. The Security Council agreed unanimously to begin the planning process to send the troops, with a final decision to come later. It called for a 12,000 to 20,000 troop presence in Darfur with the 7,000 African Union troops already there being given new weapons and being incorporated into the UN mission. Furthermore, they would have a greater mandate to protect civilians. Nevertheless, difficulties are expected to arise in finding states willing to contribute troops to the UN mission. Although the United States offered the motion, the U.S is not expected to contribute troops to the mission. Also, Omar al-Bashir, the leader of Sudan who is widely believed to be backing the Janjaweed militias in Darfur, has also frequently stated his opposition to UN peacekeepers in Sudan further complicating the problem. Assuming these problems are overcome, UN troops are still not likely to appear in Darfur for nearly a year. [64] [65]
[edit] May 2006 On May 5, 2006, the government of Sudan signed an accord with the Sudan Liberation Army (SLA). However, the agreement was rejected by two other, smaller groups, Justice and Equality Movement, and a rival faction of the SLA. [66] The agreement was orchestrated by the U.S. Deputy Secretary of State, Robert B. Zoellick, Salim Ahmed Salim working on behalf of the African Union, AU officials themselves, and other foreign officials in Abuja, Nigeria. The accord calls for the disarmament of the Janjaweed militia, and for the rebel forces to disband and be incorporated into the army. [67]
[edit] References ^ How many have died in Darfur? By Russell Smith (BBC) 16 February, 2005 ^ UN's Darfur death estimate soars (BBC) 14 March, 2005 ^ Breaking Darfur's stereotypes (BBC) 13 October, 2004 ^ Chad/Sudan: A Question of Genocide by Amy Costello (PBS Frontline) September 16, 2004 ^ An Analysis of Select Companies’ Operations in Sudan:. A Resource for Divestment (.pdf) by The Allard K. Lowenstein International Human Rights Clinic and The Allard K. Lowenstein International Human Rights Project Yale Law School. December 13, 2005 (Updated February 24, 2006) ^ a b Q&A: Sudan's Darfur conflict (BBC) 1 May 2006 ^ Fears for Sudan Islamist's health (BBC) 13 July, 2004 ^ Al-Turabi denies stirring Darfur conflict (Al-Jazeera) 31 December 2003 ^ 'Dozens killed' in Sudan attack (BBC) 24 May, 2004 ^ [1] ^ Sudan government and rebels sign Darfur cease-fire by Abakar Saleh 8 April 2004, The European - Sudanese Public Affairs Council ^ [2] ^ [3] ^ [4] ^ [5] ^ [6] ^ [7] ^ [8] ^ [9] ^ [10] ^ [11] ^ [12] ^ [13] ^ [14] ^ [15] ^ [16] ^ WikiSource Transcript ^ [17] ^ [18] ^ [19] ^ [20] ^ [21] ^ [22] ^ [23] ^ [24] ^ [25] ^ [26] ^ [27] ^ [28] ^ [29] ^ [30] ^ [31] ^ [32] ^ [33] ^ [34] ^ [35] ^ [36] ^ [37] ^ [38] ^ [39] ^ [40] ^ [41] ^ [42] ^ [43] ^ [44] ^ [45] ^ [46] ^ [47] ^ [48] ^ [49] ^ [50] ^ [51] ^ [52] ^ [53] ^ [54] ^ Kessler, Glenn and Emily Wax. "Sudan, Main Rebel Group Sign Peace Deal", The Washington Post, 2006, May 5. ^ "Main parties sign Darfur accord", BBC News, 2006, May 5.
Wednesday, May 3, 2006 10:30 PM CDT Happy Birthday To The Most Incredible Woman I Know - My Mom!
For some reason, I keep losing journal entries!!!! Ugh! I just wrote a very special note to share some of my mom's amazing attributes - unfortunately, this site tends to eat some of my posts!! I will rewrite my post tomorrow. For now, thank you mom for being such an amazing woman and role model! One year ago today my mom showed up on my doorstep to be with us as we began to hear the seriousness of my illness. She hasn't left my side since. 78 years old - still gorgeous, brilliant and feisty as hell! I love you mom! K.
Sunday, April 30, 2006 9:39 PM CDT Bone marrow biopsies suck. It was however, the means to a good end. Initial results indicate that my marrow is quite healthy! My neutrophils (precursors to white cells) and red cells are low but nothing critical. Hooray! Now we just need the results from Cali. to determine how my organs fared the large amount of radiation received last summer. Once I pass these with flying colors, we hope to move on with our next step. Thanks to MOHPA for getting me in for the biopsy so fast!
More later...
There were many marches and rallys across the country today to bring attention to the region of Darfur, Sudan. I regret not having heard about it earlier as I would have posted something about it. Please take a look at www.savedarfur.org for more info and to find out how you can help: EVENT********************************** When Wed, May 3rd, 2006. 9:00 Where 200 3rd St. N. City Hall Fargo, ND 58102 More ND events Directions Contact Lynne Spaeth Lynne Spaeth 2714 24th Ave. S. Fargo, ND 58103 Website savedarfur.org Details Lynne Spaeth will be presenting the Save Darfur Coalition's presentation to the Human Relations Commission of the City of Fargo. Event will be televised locally on May 4th on local cable channel 2.
Tuesday, April 25, 2006 9:00 PM CDT Bone marrow biopsy is schedule for way too early tomorrow am (Thurs). Blood counts are off - hopefully our oncologist can help us understand what's up? We see him Friday.
***To Jenny P's friends - a party is being held this Friday in honor of Jenny - Please check out her website for details. http://www.caringbridge.org/visit/jennypeterson
*************************************** Do you remember taking those standardized, timed math tests in high school? It was fun to try to get them all done but as the clock began to run out, you would skip the difficult problems and move on to the easier ones. I am beginning to feel that I am one of those difficult math questions.
It is April 25th, almost full year has passed since "c" day. It has been 6 weeks since we were booted from the San Francisco study and nearly four months since we knew it was likely that the treatment is San Fran. had not worked. We are still waiting -- waiting to try to get into some type of trial, program, something that will help us beat the "c".
We finally heard back from Iowa today. No news, they just got back to us. At least they finally sent the request for a bone marrow biopsy to my oncologist. We will call him tomorrow to see if we can get this done quickly.
Grant & I were saying our prayers tonight - I asked him to whom he would like to send blessings - he said God. I asked if there was anyone else and he said, "No. Just God." I thought that was pretty sweet.
Happy Birthday Andrea - we love you.
Kate, Brett & Grant
Tuesday, April 25, 2006 9:00 PM CDT Do you remember taking those standardized, timed math tests in high school? It was fun to try to get them all done but as the clock began to run out, you would skip the difficult problems and move on to the easier ones. I am beginning to feel that I am one of those difficult math questions.
It is April 25th, almost full year has passed since "c" day. It has been 6 weeks since we were booted from the San Francisco study and nearly four months since we knew it was likely that the treatment is San Fran. had not worked. We are still waiting -- waiting to try to get into some type of trial, program, something that will help us beat the "c".
We finally heard back from Iowa today. No news, they just got back to us. At least they finally sent the request for a bone marrow biopsy to my oncologist. We will call him tomorrow to see if we can get this done quickly.
Grant & I were saying our prayers tonight - I asked him to whom he would like to send blessings - he said God. I asked if there was anyone else and he said, "No. Just God." I thought that was pretty sweet.
Happy Birthday Andrea - we love you.
Kate, Brett & Grant
Friday, April 21, 2006 8:52 PM CDT Hello everyone,
Brett and I have received tremendous support over these past months from a non-profit group called Well Within. Next Friday, they will be hosting a fundraiser for their organization at the Town & Country Club in St. Paul. If anyone would like to join us and help support them, we would love to see you!!! Feel free to email with any questions! Here is the info:
Below is an invitation to Well Within' major fundraising event, Boogie in Blue Jeans, to be held on April 28, in St. Paul. We would love to have you join us for what promises to be a fun night! As you may know, Well Within's provides integrative healing services and support to people who live with serious illnesses, at little or no cost to participants..So, we rely on donations from people like you to provide our operating costs. Last year's sellout event provided funds to cover nearly six months of our annual expenses. We hope you'll help make this year's fundraiser even more successful! At the auction, you can bid on gift certificates, sporting events, golf rounds, vacation get-aways and MUCH MORE-- all for a great cause! Please pass this along to your family and friends who might want to also enjoy a fun evening of fantastic food, terrific auction items, and outstanding music from the George Hottinger Blues Band. Reservation deadline is Tuesday, April 25 so please let us know by calling 6511-451-3113. Thank you and we hope to see you on April 28! Warm regards, Mary Mary Treacy O'Keefe Executive Director, Well Within www.wellwithin.org ANNOUNCING WELL WITHIN’S
2ND Annual Spring Event
Boogie in Blue Jeans
Friday April 28, 2006
6:30 – 11 p.m.
Auction – Dinner – Dance
Town & Country Club
300 Mississippi Blvd. North
St. Paul, MN 55104
Reception and Silent Auction at 6:30 p.m.
Dinner served at 8p.m. - Dancing begins at 9:30 p.m.
($75 per person)
Last year’s event helped Well Within to provide low cost and FREE classes, services and support to those in need. We hope to see you for a fun evening of fabulous food, a great auction, and terrific music and dancing. This is a really fun event!
TO REGISTER:
You may call- 651.451.3113/ email- wellwithin@qwest.net/ or mail to:
Well Within
1880 Livingston Ave. #103
West Saint Paul, MN 55118
Please include name of each guest
Payment can be made by check or credit card
(Include 3-digit security code from back of card - do not email credit information)
(A Vegetarian Option is available- Please include total # requested ____)
NAME______________________________________________ Address____________________________________________ Phone___________________________________
Number attending_____________________Total $____________________________
Credit Card # ________________________ Exp. __________ 3 digit code_________
I am unable to attend please accept my donation $____________________________
* Check in at registration- no ticket assigned *
Mary Treacy O’Keefe, Executive Director
Vicki Katz, Auction Co-Chair Leslie Satterlee, Auction Co-chair
Tuesday, April 18, 2006 10:10 PM CDT Hi everyone - Happy belated Easter!!!
I am going to be very quick because I just wrote an entry and somehow lost it before it posted. In short, I bitched for about two or three paragraphs how we are in a holding pattern, that things aren't happening as quick as we'd like and that we are doing all of the legwork ourselves (not completely true but we are certainly conducting most of the research and pushing for a new next step).
With that said, I started the injections of my new meds today and so far so good (although I almost gave myself 10x the dose prescribed by accident! Opps!).
We went to the zoo this a.m. and had a great time seeing the baby farm animals. Grant is really into dinasours and pretending that he is the baby dinasour. He dug the babies at the zoo (new pictures).
Brett & I continue to be touched, amazed and humbled by teh kindness and support shown by everyone. A friend of mine dropped by on her way back to Chi-town last week. She asked if we were getting enough support. We got off on a tangent how people with small children shouldn't have the "c" etc... We didn't get back to her original question but I thought of it later that night. The love, support, help, favors, and shoulders has been virtually endless. We are so blessed to have such incredible family and friends and we cannot thank you all enough. It is because of this wonderous support that we have been able to raise Grant in a relatively normal environment.
Thank you all - thank you to the easter bunny for the adorable chick and bunny for Grant (we suspect that whoever you are, you are also responsible for the other gifts left on our doorstep these past months)! We have been the recipients of so many nice gestures lately -- thank you all!!!!
K, B & G.
Wednesday, April 12, 2006 7:41 PM CDT Maria here. Sorry for the delay in updates - it's been a busy week.
Kate and Brett returned from Iowa with options. They really liked Dr. O'Dorisio. He has treated about 10 people with paraganglioma in the past and has contacts at programs in the Netherlands and Switzerland. He also suggested that Kate start chemo shots that she would give herself 3 times a day. He believes it can keep the tumors from growing (although it is unlikely to shrink them). In the meantime, he'll start looking into the overseas programs.
Today, the Netherlands program contacted them from an email Brett had sent earlier (unrelated to Dr. O'Dorisio). After a series of email exchanges, the program felt she had too much radiation already to risk anymore due to bone marrow issues. She needs to have her bone marrow tested to see where it's at.
So, now it's down to Switzerland and another overseas program that Brett found and is starting to research.
Kate has been feeling pretty well during the day (not sleeping so well at night). By dinner time, she has slowed down, so we all thank those that have been bringing over meals. It lets her save her energy so she can enjoy her nightime routines with Grant.
Grant continues to entertain us all. Despite his limited television exposure, he has come up with superhero language, saying he needs to "smash it to smithereens" when he wants to stop something. The positive side of the superhero syndrome is that he thinks his hugs are magic. He'll say he has a magic hug to share, hug Kate and then say "Do you feel better, Mommy?" She does. (I guess he's right about being magic.)
We'll keep updating, although it seems like it takes forever to get more info from the docs these days. We're an impatient bunch.
(Keep the prayers and positive energies coming - we count on them.)
Wednesday, April 5, 2006 9:12 PM CDT NEWS ALERT!!!!Kate and Brett just called and said the appointment was "fabulous", they have new options and feel very hopeful. Of course, there is detail and some things need to be sorted out before a final "go" is given, but it looks positive. Kate will update the site when she gets back with the details. NEWS ALERT!!!!
Horray! Horray! for our beautiful friends Shannon & Tim Gleason! They had a baby girl today - 9lbs 4oz - NO drugs! Way to go you crazy woman! Baby girl Gleason has not told her parents which name suits her best as of yet but the choices are: 1. Hazel 2. Clementine 3.Elizabeth. Shannon suggested we vote but I suspect little Gleason will soon determine her own name. I suggested Kathryn Rae but it didn't stick :)
We are heading to the U of Iowa early Friday morning. It's a very long story how we ended up there but I will tell you that we are excited to meet this doctor. If it all works out, he will be sending us to Switzerland. It certainly sounds more asthetically appealing than Houston. We will keep you posted.
I nominated a wonderful friend of mine for TV's Extreme Home Makeover - I won't share their names with you until they win but they deserve this more than any one I know. Keep your fingers crossed for them and I will let you know when to watch!
Grant and I spent the evening alone tonight. He is such a funny little man! We listened to Peter and the Wolf for the first time and he absolutely dug it! It brought back great memeories of my Dad who used to tell me the story of Peter and the Wolf while listening to the symphony music. After listening, Grant insisted that we talk with Grandpa Norm -- so we did.
A huge thank you to all of you who have been using your connections to get us in to various trials. We are excited about this Switzerland thing - although it is still not a cure, it offers a much better outlook than chemo can offer to us. So, we will do our job to keep this at bay while Duke U. is doing their job to find a cure.
Love to all of you,
K, B & G
Thursday, March 30, 2006 8:00 PM CST MHD Alumni: Please visit Joshua Peterson (Chad Peterson MHD'89). Sorry it took us so long to get this up. Thanks Erica Will - we couldn't find the site. Please post a note and say a prayer for Joshua. We know first hand how much the support of loved ones, neighbors, strangers can provide!
http://www.caringbridge.org/visit/joshuawilliampeterson
Grant's two year appt. went very well. He actually enjoyed his physical and asked insistently if the doctor could "do it again?" He wanted the doctor to look at his eyes, nose etc... over and over again. If I didn't think it could scar Grant for life, I would share some of the funny things he said/continues to say about his anatomy. Who knew that it started already?
I had three Octreocide scans - the ones that are similar to the MIBG study. I had "excellent" uptake which is good. It is our hope that we could get into a new clinical trial in Houston. We are also looking into what the Netherlands have to offer. We have hired a cancer consultant to do some of our homework for us as it has become a bit daunting.
The meeting with our oncologist went pretty well. He spoke to Dr. F. in San Francisco and the two of them concluded that we should begin the CVD chemotherapy regimen. In the past, Dr. F. wasn't big on this therapy but I think that the two feel we should begin with a tried and ??(true doesn't fit here) therapy as opposed to another clinical trial. We said that we need to think about it for awhile. All of our research hs shown that this time of chemo. can be particularly brutal (although my oncologist thinks he can make it much more tolerable for me) and that it isn't particularly effective. It doesn't push back the "c", it merely stuns it and holds it from growing. As soon as we stop the chemo, the literature says that the tumors are likely to begin again. Thus the dilemma. Uggh... I truly don't want to feel like crap again this summer... The good news is that I have heard from other mom's who have had chemo that your mom instinct kicks in and you rise to the occasion to do what you need to in order to be a good parent. Yesterday, I had my hair wrapped up in a towel after my shower. Grant looked at my and told me I looked "cute". So, he will probably be ok with my being bald (He is also hanging out with women too much since he uses the word cute AND insists that he is a princess).
I plan to find out how to help get funding to the people who are researching Paragagangliomas and Pheochromocytomas. Much of what we have read has stated that better therapies, possibly a cure exists but that they lack the funding to research what works for this type of tumor(which is because if affects so few people). There are many "orphan cancers" out there - it is very frustrating. There is a little more funding for neuroblastomas, but from what I understand, it isn't much.
As for how we are feeling... We haven't had time to process or think yet. This is a theme that seems to work well for us. We both feel confident that we will beat this "c" -- it will just take us some time to get there.
I feel like Debbie Downer - so I will make sure that Brett updates more often - he's much funnier than I!!!
Love to all of you,
K
Monday, March 27, 2006 8:17 PM CST *************************************** I just want to assure everyone that I am not "Polly Anna" and that we certainly don't walk around beaming all sunshine and grace. In fact, last week was a pretty poor demonstration of "handling things well." But, we do our very best and truly try not to let it into the house (Also, thanks Karin and Maria for letting me vent so that I don't implode! Also, sorry that I can act like a brat sometimes Mom!!!). *************************************** Brett and I want to express our sincere gratitude for all of your prayers, postings and other acts of kindness. We most certainly couldn't make it through the ups and downs of all of this without all of the love and kindness from our friends and family (strangers too).
I apologize for the lack of updates - we've been busy running around declaring that "the sky is falling...the sky is falling." We realized that we might as well sit back and enjoy the week vs. stress out about our next step. Our Oncologist returns from vacation tomorrow (we meet with him on Wed.) and we are confident that he will have looked into the two clinical trials as well as the chemo options (we sent him info. last month). We really like him and trust his opinion --- not to mention, we haven't a clue which course of action to pursue without his direction and guidance. So, we have "chilled" and are eagerly awaiting our appt. with him.
It's funny, the first week after my diagnosis I thought about my potential "loss of dreams". I was severely distraught that Grant would not have any siblings (we planned to have four kids), that I may not realize my true career/life aspirations, that I may not get my master's in business or PHD is psych., that I may not get to volunteer in the 2008 elections (i'm still not over 2004!)... the list was long. It had not crossed my mind that I may not get to celebrate my 50th wedding anniversary with Brett or that I would not hold my first grandchild. As we discovered the seriousness of my diagnosis, I stopped lamenting and decided simply that I had to get down to the business of getting well. Many people have asked me how I have handled all of this so well --- this is why. I immediately saw all of the blessings I already have been given. Now, I just need to hold on so that I can continue to enjoy the beauty that life has already presented me.
Brett and Grant are doing well. Brett is absolutely incredible as he balances our new, crazy world and working full-time. We try to schedule all appt's around his work and he hasn't missed a single "important" appointment, he is a fully engaged and loving dad and he continues to provide excellent care for his patients. He never doubts my ability to beat the "c" and he is my biggest cheerleader. Although we have both been challenged lately, he continues to be our rock. Like I said, amazing.
Grant is nothing short of fantastic -- He brings sheer joy as he runs around the house yelling "look at me Mommy!" when he discovers a new talent or ability. He is also telling us that he is ready to go into his crib and proceeds to go to sleep on his own. Gone are the days of two hour bedtime routine - wow.
These next two days are big ones. Grant has his two year check up, I will be tested to see if I qualify for the clinical trial in Houston and we meet with our Oncologist to determine what will be our next step. Part of me wants another month... but we are tired and frightened to wait any longer. So, let's get this show on the road and kick some "c's" a**!!!
Love to all of you, K
--We just passed the third year anniversary of the war in Iraq. I am sure it would mean a lot to to a service member if you would thank them for serving-regardless of ones beliefs about the war. If you see someone in uniform, a vet or active member, please consider thanking them for serving.
Tuesday, March 21, 2006 10:02 PM CST This should be a fascinating program -
A burgeoning movement is taking place in hospitals and clinics across this country - integrating the best of high-tech medicine with a new attitude that recognizes that treating the patient as a whole person is essential to the healing process. THE NEW MEDICINE, airing on PBS Wednesday, March 29, 2006, check local listings, suggests that medical practice in America may be on the brink of a transformation. As scientific findings reveal that the mind plays a critical role in the body's capacity to heal, the medical community is beginning to embrace a new range of treatment options, including many once considered fringe.
With host Dana Reeve, who was diagnosed with lung cancer following the death of her husband, Christopher, THE NEW MEDICINE goes inside medical schools, healthcare clinics, research institutions and private practices to show physicians on the cutting edge of this new approach. By paying attention to a person's cultural values and lifestyle, stresses and supports, these doctors acknowledge the important role that patients can and should play in their own healing and healthcare.
"For years my husband and I lived on, and because of, hope," says Dana Reeve in the introduction to the program. "Hope continues to give me the mental strength to carry on, but also, I'm convinced, hope very directly influences my physical health."
Until recently, scientists viewed the connection between the mind and the body's response to disease with skepticism. Today, thanks to sophisticated new research, the complex biology of mind-body interaction is becoming clearer, and physicians are discovering how something as intangible as hope can help people heal and something as pervasive as stress can sabotage the body's ability to fight infection. THE NEW MEDICINE introduces viewers to some patients who are receiving a new kind of medical care as a result of this breakthrough in understanding:
Tammy lies in a hospital bed at one of America's leading teaching hospitals, at risk of losing her pre-term baby. Despite all the best that high-tech medicine has to offer her, what may actually save her baby's life is relaxation therapy to address the complex biochemical link between stress, the immune system and illness.
Michael is listening to a soothing voice on a visualization tape that will help him feel positive about his upcoming back surgery and speed his recovery. The source of this New Age-sounding tape? His insurance company.
Matthew, who has cerebral palsy, has lived his entire 18 years with unremitting and sometimes excruciating pain. The new therapy his doctor introduced to provide relief and enable him to attend college next year on his own is self-hypnosis to dial down the pain.
THE NEW MEDICINE explores why even some of the most conservative health institutions are now prescribing meditation and self-hypnosis alongside high-tech modern medicine. "With brain imaging, with molecular biology, cell biology, physiology, we can put all of the pieces of the puzzle together, which we certainly couldn't do even just a few decades ago," explains Dr. Esther Sternberg, research scientist at American University.
THE NEW MEDICINE reveals that medical education is also changing in response to this new science. Drexel University College of Medicine in Philadelphia is one of a growing number of medical schools where there is renewed emphasis on teaching some of the skills of pre-modern medicine - the importance of listening, comforting and encouraging the body's own healing abilities. The traditional doctor-patient relationship is undergoing a shift from paternalism to partnership, as practitioners and consumers alike have begun to promote a more holistic form of healthcare called integrative medicine - seeking to heal the whole person, not simply cure a disease.
Trust and communication are aspects of medicine that have, in many cases, been left behind by a healthcare system in which time is a precious commodity and the average doctor visit with a patient lasts about six minutes. Time to get to know and care about the whole person is a luxury that many physicians feel they don't have.
THE NEW MEDICINE explores the need for medicine to focus more on prevention and engaging people as active players in their own healthcare. At 56, Bill Fink has been wrestling with heart disease for more than 20 years. While high tech medicine has done a good job of keeping him alive, it has done a poor job of keeping him healthy. Now, in a program called "Healing Hearts," at the Scripps Center for Integrative Medicine, he's learning to develop a lifestyle that will keep him out of the operating room - exercising, learning to buy and cook healthy food, attending support groups and stress management classes, taking classes in music, yoga and spirituality, and more.
"Fifty percent of the causes of mortality in this country are related to modifiable behaviors. Smoking, eating, sedentary lifestyles, all of those and more," notes Dr. Dennis H. Novak of Drexel University College of Medicine. Ironically, medical insurance is willing to pay for extremely expensive surgery once a patient with these behaviors becomes acutely ill, but often unwilling to cover the relatively low cost of coaching them through the lifestyle changes that could prevent surgery in the first place.
The National Institutes of Health has been funding rigorous scientific research to determine what alternative healing strategies are safe and effective so that there is solid evidence to broaden medical choices for patients. "Integrative medicine means being able to offer patients a full array of choices from conventional medicine, but to be able to add those complementary and alternative strategies where we have scientific evidence that they work and they're safe," says Dr. Margaret Chesney, Deputy Director of the National Center for Complementary and Alternative Medicine (NCCAM), a division of the NIH.
For those people without health insurance, the option of complementary therapies or a physician who sees a patient as a whole person is rare, but a model program run by Dr. Ellen Beck proves it can be done. THE NEW MEDICINE visits her clinic in La Jolla, California, where medical students, pharmacy students and students of Asian medicine, supervised by volunteer doctors, dentists and nurses, all work together to provide integrative medical care for communities of people who do not qualify for health insurance. ___________________________________________________________ Brett & I have been taking classes at a wonderful non-profit called Well Within. Well Within offers classes for people who face health challenges or have experienced loss. They offer a variety of workshops and classes that that support the body's innate ability to heal. If you are interested in the program on PBS and would like to learn more about wellness and balance, we would encourage you to check out www.wellwithin.org.
Monday, March 20, 2006 4:53 PM CST A friend of a friend who sent us info re:Duke also sent this:
One more thing I would pass on to Kate. In a pilot study ( study done before clinical trials) the data significantly was able to show the positive/healing effect of prayer. There are two free prayer numbers at 2 different institutions that one can call and ask for a prayer for healing. They will pray with you on the phone and then send the prayer out to everyone in their ministries to repeat the prayer for I believe thirty days. The pilot study showed that pateints benefited from prayer even if the prayers were done by people they did not know. As well as people benefited even if they did not know people were praying for them. The 2 numbers are below.
Unity 816-969-2000 or 1-800-now-pray Ministry of Prayer 1-800-421-9600
Let me know if you have questions, Holly
I don't think we have to call the number but we are certainly appreciative of all the positive energy and prayers that you have been sending! Thanks!
Friday, March 17, 2006 8:45 PM CST Per your request... Just be glad we didn't post the full body shot picture -- Hope this one is conservative enough for ya! We will try to post new pics soon...
Sorry about the mention of the "24 hour urine" thing! Both Brett and my sister know that mentioning such details is against my "rules". Maria told me to get over it. I'm not a shy person but for cripes sakes, who wants to hear such things (is cripes a word? I have never actually used this word before)!
The results from San Fran were expected but still disappointing. It is always hard to face the reality as we had truly believed that San Fran and this study would be our miracle. Now, we just have to look for it elsewhere.
We don't know our next step yet. Dr. Fitzgerald said that he would call my oncologist to review my options. He said that he would call him yesterday (Thurs) but we haven't heard from anyone yet.
Thanks for the many offerings of assistance to get us into the study at Duke. We have many people working on it and it is our belief that the more they hear about us, the more they may be inclined to help. The people at San Fran. feel that in 5 to 10 years, a cure will exist for this type of cancer. They believe strongly that it could be the drug they are working on at Duke -- it's not perfect yet, but it is the hope of the future. Not only malignant paraganglioma/pheochromocytoma but also for pediatric neuroblastomas.
Thanks for the love and prayers. Please say a prayer for all of the children and their families who face this horrible disease. Children with neuroblastomas receive the same treatment (MIBG) that I did at UCSF. There were so many LITTLE kids playing in the waiting rooms we were in while at UCSF. It is heartbreaking. I thank God everyday that Grant is happy and healthy. For this, we are truly blessed.
Love to all of you,
Kate
(Please consider sending a note to Joe and Kris at: http://www.caringbridge.org/visit/joeb They are facing a difficult time right now and could use some prayers and positive thoughts)
Wednesday, March 15, 2006 9:19 PM CST Brett just called with an update. Kate's Feb to March CT scan comparison showed no significant changes. Her urine results (showing the level of hormones secreted by the tumors) also remains the same. So basically, in the past month there have been no real changes.
She did the MIBG scan and her tumors did not have any uptake. That means she is no longer a part of the San Francisco study. Dr. Fitzgerald and John Huberty (the nuclear specialist) feel the drug zd6474 created by AstraZeneca, has the most promise. IF ANYONE KNOWS ANYONE WHO WORKS AT ASTRAZENECA, WHO COULD REFER KATE TO ONE OF THE CLINICAL TRIALS, PLEASE LET US KNOW. (Or someone at Duke.) San Fran says that contacting the pharmaceutical company directly is the best way to get in a trial.
They also felt the study in Houston would make sense to try. She needs to do a new scan for that study to see if her tumors uptake for that treatment. That will be the next step.
They did still want her to consider the chemo (I think it is CVB), but that doesn't thrill Kate or Brett due to it's lack of success historically.
Kate and Brett will get back on Thursday (assuming our Minnesota weather allows them to, anyway). Thanks for everyone's prayers and well wishes. Now pray for a way into the new trial!!
Here is the press release on zd6474: AstraZeneca announced today that the US Food and Drug Administration (FDA) has granted ZD6474 (ZACTIMA™) Orphan Drug designation for the treatment of patients with follicular, medullary, anaplastic, and locally advanced and metastatic papillary thyroid cancer. ZD6474 is a unique once-daily oral therapy that selectively targets key cell signalling pathways involved in tumour growth and spread including VEGF (Vascular endothelial growth factor) receptor signalling and EGF (Epidermal growth factor) receptor signalling. ZD6474 also inhibits RET kinase, which drives the growth and survival of certain tumours, and is believed to be an important pathway in medullary thyroid cancer. ZD6474 is currently being developed in a Phase II clinical trial in medullary thyroid cancer and Phase III clinical trials in advanced non-small cell lung cancer are scheduled to start in the next few months.
Advanced hereditary medullary thyroid cancer, a rare malignancy, has a poor prognosis and there are currently very limited therapeutic options available. Medullary thyroid cancer is a specific form of thyroid cancer that comprises 2-3 per cent of the 25,000 new cases of the disease in the US each year. Neither standard
http://www.astrazeneca.com/pressrelease/5182.aspx
Saturday, March 11, 2006 10:45 AM CST <<>>
***Kate has been attending classes at a great organization called Well Within. The are having an open house and a free presentation this week. If anyone is interested in learning more about them, here is the information:
Thin Places: A Presentation and Discussion
Wednesday March 15th | 7:00pm - 9:00pm at WellWithin
In Thin Places: Where Faith Is Affirmed and Hope Dwells
Authored by Well Within co-founder, Mary Treacy O'Keefe who describes such signs as thin places - sudden realizations of that ethereal veil between what we know of Earth and what we believe of heaven. In sharing her family's story (and those of many others), she shows how thin places are present in ordinary times - and how such moments of grace reveal Divine loving messages of faith and hope in our daily lives.
Free, but please call to register: 651.451.3113 (www.wellwithin.org)
Hi everyone!
Quick update:
MRI / Brain Scan results - Originally, I was telling people that the there was nothing remarkable on my brain scan. You can only imagine the teasing I received on that! Great news - I do have a brain and I don't have a tumor!!!
CT of body results - The radiologists compared it to the wrong CT so we are still awaiting results. Preliminary results suggest that the tumors may have grown slightly since 2/11 scan. We are hoping that the new results will show that they are at least stable. The lesion in my spine is stable - yeah!!
We will write more - actually, we'll have Maria write more while we are in San Francisco. We are counting on Dr. F. to report miracles!!
Love to all of you!
Kate, Brett and Grant
Thursday, March 9, 2006 4:06 PM CST We had the CT and MRI today. We'll let you know what they said. We should get results today (we hope). Thanks for your prayers and for the many special ways you have shown love and support to us! K
I will post some pics of Grant as soon as I can figure out how to go from camera to PC --- I seem to be taking the long route. That is why Brett reads manuals...
Monday, March 6, 2006 8:13 PM CST We had a great and exhausting weekend! We were able to hang out with great friends and family members. Brett & I continue to be inspired by the beauty of the relationships that carry us.
Wow - we also received an incredible canvas painting that was created by a friend. The painting is of a tree which symbolizes the community and love that has supported us through these difficult months (there is more, but we will leave it at this). The artist wrote, "the tree is healthy and blossoming, reaching high into the sky and deep down into the earth. Life flows through her and a vibrant red band spins around her trunk, representing the never-ending connection and flow of life and spirituality." I am deeply touched. Thank you.
Grant and I spent the day at Karin's. Grant adores Grace, Karin's two 1/2 yr. old and I am pretty sure that he intends to steal Karin away from Andy when the opportunity arises. It is great fun to see Grant interact and talk with other kids. Grant and Grace were playing when Grace got a paper cut from the book that they were reading. Grant asked if he could kiss it and make it better to which Grace replied, "yes." After Grant kissed her, he asked if she felt better. She said yes and thanked him. I guess it's a mom thing but my heart melted. Tonite, I asked Grant to sing to me. After he finished the entire ABC song, he said "OK mom, now it's your turn." He is growing up so fast!
Tomorrow is Brett's birthday. He is the love of my life and a true gift. He is sincere, loving and incredibly (albeit sometimes nerdishly) intelligent. Not to mention he's a babe-o-rama! Happy Birthday honey!!!! I love you!
Kate
Friday, March 3, 2006 7:04 PM CST Thanks for the Birthday wishes! We had a fabulous evening with my family last night celebrating my,Timmer and Brett's birthday (3/7). My brother Thom drove down and surprised us which was incredibly thoughtful as I know he wasn't feeling well. The evening meant a lot to us and we really appreciate everyone's effort to be there and the many thoughtful details that went into the night. Thanks! We will celebrate with friends this weekend.
My actual birthday day ranked in the bottom thirties for fun. I won't go into a lot of detail other than it required my drinking Castor Oil and enduring 5 failed attempts at giving me an IV. It's a good thing that Brett I have a sense of humor and take things in stride!
Sorry for the lack of updates earlier this week. We had many meetings and tests and the week got away from us. First, my tumor marker results were insignificant - they went from 202 to 216. My meeting w/MOHPA was also fairly benign and all that was determined is that we needed to do more fact finding. The test I had yesterday showed that my ureter tube is being pushed over but it is not blocked. We met with Cyberknife surgeon today and spent three and a half hours talking with him. He was very straight forward and essentially told us that he would work with us only if we have exhausted all of our other options. All in all it was somewhat of a frustrating week. It has become clear to us that we are throwing darts and no one is willing to tell us exactly what our path should be. Not that they aren't willing to help, but there is so little knowledge out there regarding this type of cancer and from what we are told, there is little funding to research it. It will be up to Brett and myself to determine the best path to beat the "c".
So, we are counting on good things from Dr. Fitzgerald next week! We have also been researching a study in Houston and think we will be accepted if Dr. F. tells usthat we should seek a new therapy. Keep your fingers crossed that we won't need to pursue plan B and that the MIGB is working!!!
On Tuesday, my healer told me that he feels that I am getting stronger and that I will beat the cancer. I truly believe this to be true. Despite the obstacles, I know that the right path will present itself.
Grant continues to be the light of my life. He is incredibly funny and is a complete ham. Our theme throughout this fight has been to "keep dancing." Grant and I dance together nearly every day. It is amazing, no matter how tired I may feel, if he wants to dance, I get up and he keeps me dancing. There is no greater joy.
I am incredilby blessed and I am so very grateful to have Brett, Grant, my wonderful family and friends in my life. Love to all of you, K.
Friday, March 3, 2006 7:04 PM CST Thanks for the Birthday wishes! We had a fabulous evening with my family last night celebrating my,Timmer and Brett's birthday (3/7). My brother Thom drove down and surprised us which was incredibly thoughtful as I know he wasn't feeling well. The evening meant a lot to us and we really appreciate everyone's effort to be there and the many thoughtful details that went into the night. Thanks! We will celebrate with friends this weekend.
My actual birthday day ranked in the bottom thirties for fun. I won't go into a lot of detail other than it required my drinking Castor Oil and enduring 5 failed attempts at giving me an IV. It's a good thing that Brett I have a sense of humor and take things in stride!
Sorry for the lack of updates earlier this week. We had many meetings and tests and the week got away from us. First, my tumor marker results were insignificant - they went from 202 to 216. My meeting w/MOHPA was also fairly benign and all that was determined is that we needed to do more fact finding. The test I had yesterday showed that my ureter tube is being pushed over but it is not blocked. We met with Cyberknife surgeon today and spent three and a half hours talking with him. He was very straight forward and essentially told us that he would work with us only if we have exhausted all of our other options. All in all it was somewhat of a frustrating week. It has become clear to us that we are throwing darts and no one is willing to tell us exactly what our path should be. Not that they aren't willing to help, but there is so little knowledge out there regarding this type of cancer and from what we are told, there is little funding to research it. It will be up to Brett and myself to determine the best path to beat the "c".
So, we are counting on good things from Dr. Fitzgerald next week! We have also been researching a study in Houston and think we will be accepted if Dr. F. tells usthat we should seek a new therapy. Keep your fingers crossed that we won't need to pursue plan B and that the MIGB is working!!!
On Tuesday, my healer told me that he feels that I am getting stronger and that I will beat the cancer. I truly believe this to be true. Despite the obstacles, I know that the right path will present itself.
Grant continues to be the light of my life. He is incredibly funny and is a complete ham. Our theme throughout this fight has been to "keep dancing." Grant and I dance together nearly every day. It is amazing, no matter how tired I may feel, if he wants to dance, I get up and he keeps me dancing. There is no greater joy.
I am incredilby blessed and I am so very grateful to have Brett, Grant, my wonderful family and friends in my life. Love to all of you, K.
Friday, March 3, 2006 7:04 PM CST Thanks for the Birthday wishes! We had a fabulous evening with my family last night celebrating my,Timmer and Brett's birthday (3/7). My brother Thom drove down and surprised us which was incredibly thoughtful as I know he wasn't feeling well. The evening meant a lot to us and we really appreciate everyone's effort to be there and the many thoughtful details that went into the night. Thanks! We will celebrate with friends this weekend.
My actual birthday day ranked in the bottom thirties for fun. I won't go into a lot of detail other than it required my drinking Castor Oil and enduring 5 failed attempts at giving me an IV. It's a good thing that Brett I have a sense of humor and take things in stride!
Sorry for the lack of updates earlier this week. We had many meetings and tests and the week got away from us. First, my tumor marker results were insignificant - they went from 202 to 216. My meeting w/MOHPA was also fairly benign and all that was determined is that we needed to do more fact finding. The test I had yesterday showed that my ureter tube is being pushed over but it is not blocked. We met with Cyberknife surgeon today and spent three and a half hours talking with him. He was very straight forward and essentially told us that he would work with us only if we have exhausted all of our other options. All in all it was somewhat of a frustrating week. It has become clear to us that we are throwing darts and no one is willing to tell us exactly what our path should be. Not that they aren't willing to help, but there is so little knowledge out there regarding this type of cancer and from what we are told, there is little funding to research it. It will be up to Brett and myself to determine the best path to beat the "c".
So, we are counting on good things from Dr. Fitzgerald next week! We have also been researching a study in Houston and think we will be accepted if Dr. F. tells usthat we should seek a new therapy. Keep your fingers crossed that we won't need to pursue plan B and that the MIGB is working!!!
On Tuesday, my healer told me that he feels that I am getting stronger and that I will beat the cancer. I truly believe this to be true. Despite the obstacles, I know that the right path will present itself.
Grant continues to be the light of my life. He is incredibly funny and is a complete ham. Our theme throughout this fight has been to "keep dancing." Grant and I dance together nearly every day. It is amazing, no matter how tired I may feel, if he wants to dance, I get up and he keeps me dancing. There is no greater joy.
I am incredilby blessed and I am so very grateful to have Brett, Grant, my wonderful family and friends in my life. Love to all of you, K.
Thursday, February 23, 2006 2:41 PM CST Hi everyone-
I debated whether to post this clarification, but some people are confused and are calling/posting congratulations. While it is our intention to be cancer free, this is not our reality YET. The posting that Kate is cancer free and in perfect health is a statement of intention. I plan to be cancer free and I won't disappoint!!
We leave to see Dr. Fitzgerald again on March 13th. We are required to go to CA every three months. We will see my local oncologist at MOPHA on Tues and have another CT scan on March 10th. After these results, we will determine whether the 131MIBG radiation worked. In the meantime, we are searching for plan B, C and D. We intend for the MIBG therapy to have worked but we don't want to waste a second should we find that the tumors are still growing. The recommendation at this point is a chemotherapy called CVD but we know that this merely holds the tumors back and is not a solution to the problem. So, please keep us in your prayers and thoughts as we enter these next few weeks.
Thank you for your positive words, intentions, prayers and for the great love you have shown us. Much love to you all....
Kate
Monday, February 20, 2006 8:41 PM CST Quick note - Thank you to all for the positive affirmations. Your support, prayers and intentions mean the world to us. I have been feeling much better this past week. I even went on "girl's weekend" (it was only a girl's night but still very fun!). I am extremely fortunate to have such wonderful friends. Grant received a Llyod Christmas haircut (Dumb & Dumber. We will be sure to post pics of the poor boy soon.
Renae T- I had to laugh at your last entry. Julie brought a photo album to girl'w weekend of that era. We all agreed that those were not good times in the fashion industry - It was also unanimous that those were not good times for me. The bright red lipstick, giant hair and jeans to my navel! Yikes!!! The shower was a blast --- undignified --- but a blast!
Love to all of you!!
**************************************** Kate is cancer free and in perfect health.
Thanks everyone! The tumor marker test results will be in next week and will reflect all of your positive affirmations and well wishes.
We are forever grateful to all of you.
Thursday, February 16, 2006 8:04 AM CST It's Maria again. I've been faithfully reading your guest entries and have been struck by how many times friends and family comment on how inspirational Kate is to you. I'd like to ask for a campaign to turn the tables and inspire Kate.
Kate's "Well Within" class has been talking about how important it is to stay positive to keep the cancer at bay. A specific example is not to say "I will get better" but to say "I am better". She is asking how to do that when each medical visit seems to give her not so positive news. So, send us your ideas, your quotes, your prayers that help you when you need a little emotional lift! Not only will they help Kate, but probably can be used by every other reader of the site.
Here's the news: Kate's latest CT scan shows that many tumors have grown again. One is threatening her kidney (I think it is pushing on it and could impair it's functioning.) There is a "good news; bad news" component to the results. There appears to be tissue necrosis in the middle of several tumors. That could be very good news and mean they are dying from the inside out. It could also be very bad news and mean they are growing and the middle tissue just can't get enough blood supply because it is going to the growth (or something like that - can you tell I'm not as into the medical jargon as Kate is!!). Overall, she feels ok, but is having on and off stomach pains that range from mild to severe. The pains seem to be due to the number of tumors. Basically, there isn't much room in there so any movement in the colon causes pain. Just too crowded.
Thus the need for inspiration and positive thoughts. We need to put our collective energies toward the "good news" scenario! She'll have another CT scan in a month and will have tumor marker results again in about 2 weeks. If the marker go down again, it is a good sign that the "good news" is winning. The ultimate sign will be when the tumors shrink and disappear. So use visualization that they are being eatin' up alive!
Love to all - can't wait to see your creative, positive energies at work.
Maria
Monday, February 13, 2006 1:14 PM CST Pictures from Grant's Bday are under "view photos".
Hello, all! It's been awhile since Kate's been able to update the site so I thought I'd throw in a quick one. Kate and Grant have the yucky cold that just won't go away (They are at the doctor for the 3rd time with Grant right now!) The trip to Mexico was a success. Kate looked very relaxed when she got back and may have even gained a pound.
It has been a busy week celebrating Grant's second birthday. He had a great party with lots of grandmas, aunts, uncles and cousins to help him eat the cake. He is really talking up a storm, even if it is in his funny little stuffed up nose voice.
Kate has been feeling generally well, with some stomach pains that they are trying to figure out. Her cold and taking care of Grant with his cold, are keeping her energy level lower than usual. Hopefully, they have seen the worst it and good health will return shortly.
I'm sure Kate will be updating shortly, especially after she develops pictures of the birthday party. Until then, ....
Maria
Thursday, February 2, 2006 9:06 PM CST Brett here. We received some good going away news before our trip. Kate's marker came back at 202. That is the lowest it has ever been. We were obviously thrilled and look at this as the sign we were looking for that we are back on track. Dr. Fitz was glad to hear the number was down but was still concerned about the CT results. He still preaches patience. Does he know who he is talking to? Anyway, we eagerly await our departure. I am such a genius that once again I fried myself trying to be smart and fake-baking for the second time in my life. I did this prior to our Costa Rica trip a few years ago and vowed not to do it again. So once again I am staring at my crimson stomach cursing the attendant that said "beginners usually go 8-10 minutes". How does a homer like me end up with a woman like Kate. Many have wondered the same! Keep sending positive vibes. We will be thinking of all of you while Kate is basking in the sun and I am back in the room liberally applying aloe. Adios!
It is Jenny Peterson's birthday on Thurs. Feb. 9th. The link to Jenny's website can be found below. I am sure her family would love to hear from you.
Tuesday, January 31, 2006 4:31 PM CST We did it! We booked a trip to Playa del Carmen and we leave this Saturday! We are extremely excited to take this little break from the world. We have several members of my family (thank you!) who will help us take care of Grant and everything all fell into place. Brett & I love to travel - we have never done an all-inclusive such as this as we usually stay "off the beaten path." We are REALLY looking forward to the sun and relaxation!
Grant will turn two on Feb. 9th - we can hardly believe that he is such a little man already. Everyone told us that time would sail. Despite this knowledge, it has still taken us by surprise. He exerts his independence every time I want to do something for him at which time he insists that he is a big boy and "I do it". My dad would be proud as Grant's grammar is better than most adults (well, at least his uncle Nate's... :). He asks "may I" says that he is "well" if asked how he is doing.
We should receive the results from my tumor marker any day now. We'll keep you updated.
Thanks for all of the advice and the many offers regarding our vacation. We really appreciate it! We are so very grateful to all of you for the many blessings you have given us.
Grant shares his birthday with a special person, Jenny Peterson (Feb.9th). Jenny's website is still up for those of you who would like to post a note or memory. Please see the link below.
Kate
Thursday, January 26, 2006 7:19 PM CST Ahh shucks you guys... I'm gonna get a big head with you telling me I look so purrty an' all! You'll tell a person w/ the "c" anything to make her smile, huh??! I will say however, that my son is quite a looker!
Ok, after a few days of throwing ourselves a second pity party (Brett even took an afternoon off work which is almost unheard of!), we're back baby! The fight is on once again. Brett & I are trying to find out if there are any new treatments and we plan to push Dr. F. to see if we can get into the study at Duke. We have also heard that there are specialists for this type of cancer in Switzerland. We have also contacted an advocate in NY to see what he can dig up. Of course, my own doctors are also looking in to this and doing what they are able.
The new scare brought some clarity back into our lives. I had started to allow daily "life" concerns creep back into our world and this is just another reminder that these little things truely don't matter. So, we're listening! We don't need anymore reminders! I had been thinking about returning to work for a variety of reasons but have decided that instead I will stay home with Grant and focus on my family, diet and health (not that I have a job to return to but a few options have presented themselves). At least for the next few months. WHEN we get better results in March, we will re-evaluate.
Brett and I have decided to go on vacation. We don't know where or when but we are waiting to hear from two travel agents on fire sales. We plan to go to Mexico - we won't bring Grant so we will only go for three nights. Any suggestions?
Hope you are out enjoying the weather --- 45 degrees in January... how scary is that??!!
Grand love to all of you!
**hey "book" clubbies, what are we reading this month??
Kate, Brett & Grant
Friday, January 20, 2006 11:23 PM CST First a funny story. Went to Kate's nephews' production of the American classic One Flew Over The Cuckoo's Nest at CDH where we had front row reserved seats waiting for us. After the play we were fighting our way through the throng of teenage girls to congratulate Timmer and Coley. We were standing talking to Coley when his drama teacher runs up, pushes Coley and calls him a little liar. She scolded him for saving seats for his supposed "handicap" aunt, stating there was no saving seats for anyone let alone his beautiful vibrant aunt who looked anything but disabled. Upon seeing the panicked look in Coley's eyes, Kate finally let on that she indeed had stage 4 cancer to which his teacher replied..NOOO!....(Pause)......Come on....(Longer pause).......Do You Really? When she finally realized that Kate wasn't lying her look became priceless horror at what she had just said and after surveying the room for a graceful exit, settled for walking away shaking her head. We still are laughing feeling horrible for this wonderful woman's harmless gaff.
News comes in two categories tonight: Good- The lab that did the tumor marker used a different assay with a completely different normal reference range thereby making the 3500 number meaningless- and didn't bother to tell anyone about it. Whoops. So we will be rerunning that one next week. Some of the tumors actually shrunk and some stayed the same on the CT we did last night.
Less Good- Some of the tumors have increased in size suggesting possible disease progression (think of your favorite four letter word here).
So we were in the mood for a little distraction tonight. Thank you Timmer and Coley. You guys rock.
More later, Brett
Thursday, January 19, 2006 9:26 PM CST ^$@!!!@@#I)($U&@?!?!#@@!!
That about sums up our day. The quick summary is that our tumor marker results came back at 3,500. Yes, that is thirtyfive hundred (I had to ask twice), up from 350. We went to MOHPA to draw more blood for a re-do as it is our hope that the Mayo goofed up the results. In the meantime I confessed to one of my favorite nurses, Leanne, that I haven't been feeling stellar these last few weeks and that the marker could possibly be correct. Being that MOHPA, Dr. S. and Leanne rock, they sent me for a CT scan tonite so that we wouldn't have to wait it out. I hope that NONE of you ever have to go through this experience but if any of you have to walk this path, MOHPA and Dr. S are the way to go! (We are so happy for Leanne - she is expecting a boy - and Lewis - he is expecting a girl!) March of the penguins. Watch it because you soon will be living it.
We should get the results from our CT tomorrow. The tech thought that someone would read it sometime tonite. The tumor marker results take a week.
So, with that said... Brett and I have been discussing a vacation.
Wednesday, January 18, 2006 9:37 PM CST Uggh... We still haven't received our tumor marker test back. It has to be sent to the Mayo as it is a specialized test and Mayo hasn't sent it back to my oncologist yet. Oh well, no news is good news!
I spoke w/Michelle today. Michelle is the woman from Fl. who is also battleing malignant paraganglioma. I always enjoy talking with her as she is probably the only person w/whom I can relate. She is approx. my age and has a four yr. old son. She is doing well and will see Dr. F. next week for her first follow up. We will be thinking of you Michelle!!
Michelle also told me about some other drugs/chemos that her oncologist suggested they try. I will email my docs. tomorrow and run the names by them to see what they think. Brett & I also contacted a well-known physician in NY. He specializes in cancer and works only as an advocate, providing research etc... He is spendy but comes highly recommended by someone I greatly respect. We hope that he will be able to meet with us in the near future. Brett and I have always enjoyed traveling... who knew it would be to chase down medical treatments! Brett has never been to NY so we will try to spend a couple of days there. ???
Hope you are all well. Once again, we cannot begin to convey our gratitude for your prayers, love and for writing/visiting etc... Our love to all of you, K.
Tuesday, January 17, 2006 8:33 PM CST Hi --- Nothing new to post. We didn't get the tumor marker results today. Becky & Leanne, you know how patient I am :) We hope to have them tomorrow.
We posted a study from Duke on our last journal entry. Many of you had questions about it. Unfortunately, we have become all too adept at reading these things. I had always enjoyed reading scientific journals in college or reading the journals that Brett receives....not so much anymore :).
The results of this study are similar to what UCSF has found in it's own research. It is good to know that there are other institution's researching MIBG therapy. It's our hope that paraganglioma is gaining interest in the scientific world -the more interest it generates, the greater the likelihood that they will find a cure. Also, I received twice the dosage of radiation than those in the Duke study. The individuals in this study doubled their life expectancy (average) with only 400mci. Because I had over 1,000 mci, I should quadruple what they originally told me (which I know was not correct anyway). By that time, we will have found a new medication/therapy that will rid me of the "c".
We hope that you are all well and enjoying each day! Much love to you! K.
Sunday, January 15, 2006 3:28 PM CST Here is a new study we found on-line at Duke U. I received (131)I-MIBG therapy at UCSF in July. Whereas the people in this study recieve approx. 400 mCi of the radiation, I recieved 1028 mCi of the radiation. Here is the abstract:
Abstract INTRODUCTION: Iodine 131-meta-iodobenzylguanidine ((131)I-MIBG) has been applied to the palliative treatment of metastatic pheochromocytoma in small studies. We report our institutional experience for the treatment of metastatic pheochromocytoma and paraganglioma. METHODS: We performed a retrospective review of 33 patients with metastatic pheochromocytoma (n=22) and paraganglioma (n=11) treated at our institution with (131)I-MIBG over a 10-year period. RESULTS: Patients received a mean dose of 388 /-131 mCi (131)I-MIBG. Median survival after treatment was 4.7 years. Most patients experienced a symptomatic response leading to an improved survival (4.7 years vs 1.8 years, P<.01). Patients with a measurable hormone response demonstrated an increased survival in comparison to those with no response (4.7 years vs 2.6 years, P=.01). Patients who received a high dose (>500 mCi) as their initial therapy also had improved survival (3.8 years vs 2.8 years, P=.02). CONCLUSION: These data support (131)I-MIBG treatment for select patients with metastatic pheochromocytoma. In our experience, prolonged survival was best predicted by symptomatic and hormone response to (131)I-MIBG treatment. An initial dose of 500 mCi may be optimal. The benefit of (131)I-MIBG treatment for metastatic pheochromocytoma must also be weighed against its side effects.
View PubMed record
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Wednesday, January 11, 2006 8:03 PM CST Until one is committed, there is hesitancy, the chance to draw back always ineffectiveness. Concerning all acts of initiative (and creation), there is one elementary truth the ignorance of which kills countless ideas and splendid plans: that the moment one definitely commits oneself, then providence moves too.
All sorts of things occur to help one that would never otherwise have occurred. A whole stream of events issues from the decision, raising in one’s favor all manner of unforeseen incidents and meetings and material assistance, which no man could have dreamed could come his way.
Whatever you can do or dream you can [do], begin it. Boldness has genius, power and magic in it.
Begin it now. - Goethe
I have always loved this quote (as my team at ADP knew well!). It has taken on an entirely new meaning in my family's life. We believe and are committed to the fact that I will beat this. Thank you for believing it too -it is what makes all the difference.
We won't get our tumor results until next Tues. or Wed. My basic bloodwork all came back great (I assume since we didn't hear otherwise).
Good luck Becky, Leanne, Lewis and MOHPA & team! You will kick butt this Friday!!!! You are the ABSOLUTE best!!!!!
K.
Sunday, January 8, 2006 10:44 PM CST I found this on my brother's company website and thought I would share it w.you: http://www.globalcommunity.org/flash/wombat.shtml
We had a great, relatively stomachache-free weekend! Hope you had a good one too! We will post our MOHPA results as they come in this week. We still like Libby's dream about the number four!
Love to all of you!
K.
Wednesday, January 4, 2006 8:53 PM CST Happy New Year to each of you!
I have already received a couple of calls from people to tell me how happy they are that I didn't get into my world beliefs! How can I have so many wonderful, yet politically and socially neoconservative friends??!!!?
I talked to Dr. E. last night at 9:30 pm! She is a crazy woman to be working so late!! I am so fortunate to have her in my corner and I know that I wouldn't feel nearly as confidant about kicking the "c’s" a** if it weren't for her!
I saw Dr. E. on Tues am after making an emergency phone call to her office on New Year's Eve. Brett & I panicked over something pretty insignificant - Brett called and after leaving a message for the Dr. on call, we realized that it was 11:55 pm! Happy New Year's Dr. McHugh! It turns out that my symptoms were mainly from my unbelievably slow thyroid. Because my test results are still going in the wrong direction after three weeks, we decided to triple my dosage. Dr. E. called Dr. Fitzgerald in San Fran. last night to tell him the results. She told him that she had seen me that morning and that I looked good. He laughed and said that if we don't get this thyroid thing under control soon, I won't look good for long. Brett & I got a huge laugh over this! Well, at least it's funny for now... All in all, this thyroid thing is NOT a big deal. I am experiencing some slight edema (water retention/ puffiness) but not too bad. This should reverse over the next couple of weeks.
Grant continues to amaze us! Lately, he scrunches up his face, makes his best “I’m so concerned face” (similar to photo above) and tells me that he is sad - as soon as I acknowledge his sadness, he jumps up and shakes his head and hands with his tongue hanging out yelling "Now I'm silly!" He also surprised us today by naming all the shapes and colors in the book he was reading and calling the stars “estrella’s”. We will begin working on Algebra next week.
Despite the phone call to the Doc's office, we had a fantastic New Year's Eve celebration. Our original plans to go to Karin and Andy's were foiled when Grant came down w/a cold. It worked out for the best as we had a great time in Grant's tent - it was quite a site, Grant, Brett, Bootsie II (our cat), Woofy (Grant's GIGANTIC stuffed dog from his uncle Nate) and I sat in this little tent watching The March of the Penguins. We truly had a blast!! I LOVE my family!!!
Wishing all of you peace and friendship!
**Libby, we are doing another tumor marker test next week - I am now counting on the number to be four!!!! Think 4 everyone!!!!
Kate, Brett & Grant
Wednesday, January 4, 2006 8:53 PM CST Happy New Year to each of you!
I have already received a couple of calls from people to tell me how happy they are that I didn't get into my world beliefs! How can I have so many wonderful, yet politically and socially neoconservative friends??!!!?
I talked to Dr. E. last night at 9:30 pm! She is a crazy woman to be working so late!! I am so fortunate to have her in my corner and I know that I wouldn't feel nearly as confidant about kicking the "c’s" a** if it weren't for her!
I saw Dr. E. on Tues am after making an emergency phone call to her office on New Year's Eve. Brett & I panicked over something pretty insignificant - Brett called and after leaving a message for the Dr. on call, we realized that it was 11:55 pm! Happy New Year's Dr. McHugh! It turns out that my symptoms were mainly from my unbelievably slow thyroid. Because my test results are still going in the wrong direction after three weeks, we decided to triple my dosage. Dr. E. called Dr. Fitzgerald in San Fran. last night to tell him the results. She told him that she had seen me that morning and that I looked good. He laughed and said that if we don't get this thyroid thing under control soon, I won't look good for long. Brett & I got a huge laugh over this! Well, at least it's funny for now... All in all, this thyroid thing is NOT a big deal. I am experiencing some slight edema (water retention/ puffiness) but not too bad. This should reverse over the next couple of weeks.
Grant continues to amaze us! Lately, he scrunches up his face, makes his best “I’m so concerned face” (similar to photo above) and tells me that he is sad - as soon as I acknowledge his sadness, he jumps up and shakes his head and hands with his tongue hanging out yelling "Now I'm silly!" He also surprised us today by naming all the shapes and colors in the book he was reading and calling the stars “estrella’s”. We will begin working on Algebra next week.
Despite the phone call to the Doc's office, we had a fantastic New Year's Eve celebration. Our original plans to go to Karin and Andy's were foiled when Grant came down w/a cold. It worked out for the best as we had a great time in Grant's tent - it was quite a site, Grant, Brett, Bootsie II (our cat), Woofy (Grant's GIGANTIC stuffed dog from his uncle Nate) and I sat in this little tent watching The March of the Penguins. We truly had a blast!! I LOVE my family!!!
Wishing all of you peace and friendship!
**Libby, we are doing another tumor marker test next week - I am now counting on the number to be four!!!! Think 4 everyone!!!!
Kate, Brett & Grant
Saturday, December 31, 2005 8:14 PM CST
Happy New Year!
Brett is putting Grant to bed for the night which gives me a moment to write. I just erased a four chapter droning of my new year's reflections - you should be relieved as I was on my soapbox again regarding my beliefs about the world and the way I think it should be. Instead of discussing my global beliefs with you, I thought it best to keep it somewhat surface and contained to my thoughts concerning all of you.
Over the past couple of weeks, I found myself saying "thank goodness that 2005 is nearly behind us!". While I am relieved to begin a new year, I must also recognize and be grateful for the many blessings and teachings of the year past. To save all of you from another rambling, I will simply say this: Thank you. Thank you for the incredible community that has surrounded us and truly pulled us from some pretty dark, deep valleys. Brett, Grant and I are so incredibly grateful for the acts of kindness that all of you have shown to our family. That is our promise for 2006 - that wherever and whenever people need our support, we will be there to provide it.
Thank you to the loves of my life, Brett & Grant (my family too!) - you already know my promise to you!
May 2006 bring great joy, grand adventure and glorious love to all of you!
Kate, Brett & Grant
Monday, December 26, 2005 11:16 PM CST Impression: 1. Dramatic improvement since the earlier post-therapy scan of 7/26/05, demonstrating an impressive and almost complete response to therapy......... This was our early Christmas present that was faxed to us on 12/22. It was the summary portion of the radiologist's report on our most recent MIBG scan performed while we were back in San Francisco a few weeks ago. It is the first time we have had some good news on one of these reports. If this was the only report that we had seen lately we would begin our world tour of thanking all of you personally for your prayers and well wishes. However, we know from Dr. F that these results only mean that we have had "some" impact on these tumors and that the real effects will not be known for potentially a couple of years and that this is only round one in our lifelong fight. That being said, we still really enjoyed having some good news come our way and know that it is only the beginning of more to come. Kate told her family members that she was going to copy the report and give them all a copy for Christmas.
From our family to yours, we hope you have a truly memorable holiday season with the ones you love and wish you health and happiness in the year to come.
Brett
Wednesday, December 21, 2005 9:23 PM CST *We met with Dr. John at MOHPA today. There isn't much to report as he hadn't yet received the summary letter from Dr. F. in SanFran. It was confirmed that the surgeons we have seen feel it is too dangerous to do surgery and the risk is too great at the moment. The surgeon in SanFran is willing to do it should my "c" get worse. This is a mute point as the "c" won't get worse! All in all, the "c" is stable. I told Dr. John that I am going to act as though I am in remission. He suggested partial remission -- either way, as long as I get to use remission. It's a beautiful word.
I wish you all peace and life long health!
K. * **To all who knew Jenny, Jenny's mom posted a note to all of you on her website. Please click the link below to read. If you haven't shared a memory or written a note, please do so. Again, you don't have to write a masterpiece, just share a story or thought. It means so much to hear from those you love and I know it will mean so much to her family. Don't put it off --- it means too much. Thanks!!!!! K.
Here's another quickie:
-Tumor marker went up 2 points. This basically is an insignificant change and while the news isn't bad, I am not a patient person and want it to go DOWN!! I am now at 329 (normal is 0-30). Monthly results really don't matter, it is the trend that we are looking for.
-I spoke w/Dr. E late last night and we have relatively good news about my thyroid. We were a little suspicious that I had gained the six pds. so quickly where as last month, I was eating a Pumpkin Blizzard per day and couldn't gain a pound. Sure enough, I went from being extremely hyperthyroid to HYPOthyroid - extremely hypo! Although I would have preferred that my thyroid just go back to normal, it is much better to have hypo (slow/low)thyroid. It is much safer and the drugs I have to take don't have as many side effects. Brett is also happy that my thyroid has slowed! I am not as neurotic as I was a month ago and we are all happy about that!! It's a good thing that I married a saint (excluding his college days of course)!!
-We will meet w/Dr. John, our oncologist, tomorrow.
We hope that all of you are enjoying this holiday season. There have been too many reminders as to why we shouldn't sweat the small stuff and celebrate each day. So tell the people you love how you feel and seek joy!!
Love to you all,
K, B & G (**There are new pics of Grant under "view photos")
Wednesday, December 21, 2005 9:23 PM CST Here's another quickie:
-Tumor marker went up 2 points. This basically is an insignificant change and while the news isn't bad, I am not a patient person and want it to go DOWN!! I am now at 329 (normal is 0-30). Monthly results really don't matter, it is the trend that we are looking for.
-I spoke w/Dr. E late last night and we have relatively good news about my thyroid. We were a little suspicious that I had gained the six pds. so quickly where as last month, I was eating a Pumpkin Blizzard per day and couldn't gain a pound. Sure enough, I went from being extremely hyperthyroid to HYPOthyroid - extremely hypo! Although I would have preferred that my thyroid just go back to normal, it is much better to have hypo (slow/low)thyroid. It is much safer and the drugs I have to take don't have as many side effects. Brett is also happy that my thyroid has slowed! I am not as neurotic as I was a month ago and we are all happy about that!! It's a good thing that I married a saint (excluding his college days of course)!!
-We will meet w/Dr. John, our oncologist, tomorrow.
We hope that all of you are enjoying this holiday season. There have been too many reminders as to why we shouldn't sweat the small stuff and celebrate each day. So tell the people you love how you feel and seek joy!!
Love to you all,
K, B & G
Tuesday, December 20, 2005 4:37 PM CST Hi everyone! Thanks for all of the prayers and condolences for Jenny. I know that most of you did not know her but prayed for her family and friends anyway. I haven't been "tight" with Jenny since grade school - but it didn't matter as whenever you saw her, you felt her tremendous warmth and friendship. I will be thinking of her family and friends and sending you my love each day.
Quick update:
-Nothing yet on the tumor markers - I hope to hear tomorrow.
-Saw my fav. Doc. yesterday - we think my thyroid has gone from hyper to normal (we hope, it may have gone hypo...). It is possible for my thyroid to go into remission on it's own. Keep your fingers crossed!
-I gained six pds. since my last visit! Hooray! I am a mere two pds. away from my normal weight(PP.w/the c. do not want to lose weight! That is never a good sign!)!
-I need to stay away from anyone who is sick. This will be difficult w/a little guy...
-We ask that you was your hands or use the Purell at the door when you come to visit ") Apparently, if flu season is a bad one, I will need to stay home. Good luck on that one!
Thank you to everyone who has offered so much love and support! I know a lot of people read the site and we are so appreciative of your love, prayers and positive energy. I know many from my high school have been reading our site as well and I want to thank you also for your love and concern. Grammer - if you are reading today, please send me a picture of those triplets of yours!! I hope that they sleep well for you tonite!
I will write more tomorrow as we find out more test results.
Much love to you all,
Kate, Brett & Grant
Wednesday, December 14, 2005 4:26 PM CST Greetings to everyone on this beautiful, snowy day. It has been difficult to write in this journal to provide updates about me and my family in light of Jenny Peterson's death. I am so deeply saddened by the loss of such a truely delightful person.
Jenny was the very first person I met when I moved to Moorhead in the second grade. Always so open and inviting, she was also the first person outside of my family and very closest of friends, to drop over when I was initially diagnosed with the "c". It seems ironic and cruel that she stood in my doorway seven months ago w/tears in her eyes for my family's struggle. Now, we all stand with tears in our eyes for hers. Jenny offered us great support throughout these last months - every time she dropped by, she was laughing and full of light - always running off to football, fantasy football or some other fun and sure to be crazy event.
One of Jenny's close friends was here last night and told me that if ever there was someone who lived life to the fullest, it was Jenny. I hope to gleam some lessons from this woman who was so successful at life.
In spirit of Jenny's humor and incredible and constant joke telling, I thought about writing a joke. Since we all know that I can't tell one well (at least those that know me well know that I am horrible at it!!), please pass along any good ones that you have! Cheers to you Jenny!
Much love to all of you, K.
Information about services for Jenny can be found at: http://caringbridge.org/visit/jennypeterson
*We should receive my tumor marker test results next Tues.
Monday, December 12, 2005 8:20 PM CST In honor and memory of Jenny Peterson, we ask that you please go to the following website and post your cherished memories and stories in the guestbook. I know that Jenny's family will treasure your stories and well wishes. Jenny has blessed our lives with her humor and love. Please write in and share how she specifically touched your life. We love you Jenny!
http://www.caringbridge.org/visit/jennypeterson
Please contact the funeral home for updated service information. Some of the details have changed from previous updates.
http://www.williamsfuneralhome.com
Williams-Hanson-Kaun Funeral Home 205 South Rum River Drive Princeton, MN 55371 Phone (763) 389-1131
Sunday, December 11, 2005 6:13 PM CST I have some horrible news that I can't even begin to process. Our beloved friend, Jenny Peterson, was killed in a car accident early this morning while driving to work. I was asked to post this information and I will certainly post the information about services as soon as I know anything. I have so many thoughts and wonderful stories about Jenny but they will have to wait for another day. Today is most certainly a terrible one as every single person that has ever met Jenny instantly became her friend.
Thursday, December 8, 2005 9:49 PM CST Sorry for the lack of updates this week. We have been a bit tired after the long week, weekend and surviving both Brett & Grant having the stomach flu.
It is great to be back at home with Grant. He is such a love and is absolutely hilarious. He now calls me "honey" instead of mom - in fact, he calls me "my honey." Everything is me, mine or my. Thus far, this egocentricism is still pretty cute!
I went out w/friends from bookclub last night. It was great to get out and great to feel well. It was particularly great to talk w/wonderful, intelligent women about things other than the "c". Thanks ladies!!
Jeff and Alley get married this Sat. We are so thrilled for them. My dad also died shortly before our wedding and although it was difficult, I knew he was there with us. I know that Ron will be with them and will be so happy and proud to know that his son has found his love.
Much love to all of you. Each of you is such a gift to us and we know it is because of all of you that I am on the road to wellness. Thank you. Kate
Thursday, December 1, 2005 5:34 PM CST OK, we're going to try delivering this message again after a day of review, clarification, etc.
We've been getting many comments from people that the journal entry from yesterday seemed like bad results. It's not! No surgery...no 2nd treatment...because Dr. F believes the first treatment worked and the tumors are "knocked down"!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The MIBG results were good! The fact that the tumors did not do an uptake is being viewed as a positive thing. (Damaged tumors don't function as well.) But how does that gel with the CT and PET scans that didn't look so great? Apparently, the tumors are there but he believes that with patience (there is that word again) we will see the "real results" in 12-24 months. He thinks they may continue to shrink and that there are more primary tumors than we thought. That is good because it means it is not spreading. He did not feel there were any new tumors.
Brett and Kate asked how they should be feeling. "Hopeful" was the answer. Kate reminded him that Mayo gave her a 2 year prognosis. He stated that he felt her prognosis was "much better than that".
Her 24 hour urine exam shows the tumors are not secreting much hormone anymore (Her hormone count is almost back to normal.
Of course, he noted that there are no guarantees and as we all know, there never are, but he believes they have bought themselves some time and that some promising treatments are on the horizon. In fact, he is recommending her for another trial using the "inferon" drug that has been getting such positive press. He emphasized that this is a very rare cancer and no one can predict how it will go. But he is the most experienced MD with it and he feels positive!
He is happy with the way she looks (hasn't everyone always been happy with that!), the results of her general physical and the strength she is showing.
This isn't over, paraganglioma never goes away. But this isn't over!! Kate has a lot of fight in her and those tumors are learning all about it!!
Everyone is stunned, happy, grateful. Your prayers and energies are working!! We love you all!!!
Maria
Wednesday, November 30, 2005 9:36 PM CST Our dearest friend's dad passed away yesterday. We are so sorry that Ron Ohe has died and our hearts go out to Jeff & Alley, Alli, Carol and the rest of Ron's family. We love you guys. We will always fondly remember Ron's famous chuckle. It always brought a smile to our face and he shared it graciously with others on a regular basis. I (Brett) had the pleasure of growing up with Ron, whether it was at church, as a basketball coach- he always had the sharpest coordinated sweat suits, or as a constant in the stands at every sporting event of Jeff and Alli's. We will miss him.
As awkward as it feels to transition this way, we have many friends and family waiting to hear how our meetings went today. Well, we have good news and we have ??, news??. The GREAT news is that I (Kate) do not have to be away from Grant for weeks on end. We will not be having surgery in the near future and the I-131 MIBG scan we did today showed no uptake in the tumors.
What does this mean? Who the hell knows. Brett & I are still trying to get our arms around this information and don't know whether to cry tears of joy or tears of anguish. So, I think we will just sit down and cry - we'll sort it all out later.
Essentially, Dr. F. said that I no longer have uptake of the radioactive isotope - he hopes that this is good and is also hopeful that I have several primary tumors and that there is not as much metastatic disease as thought. He told us to be patient (to be what?) and that we should sit back and enjoy each day. Life holds no promises. There is a clinical trial at Duke that he will check into on our behalf. They are working on a promising new drug for tumors in the same family. He hopes that we can buy enough time until the drug is ready or he hopes that I will be eligible for this trial. Brett & I can't figure out how to respond to all of this news. I asked Dr. F. how we should feel. He replied "hopeful". So hopeful we will remain. I told him that I am a do-er and that I need a next step - again I am told to be patient (I am good at neither definition of this word by the way).
We will try to bring some meaning to this in the near future but tonight we are too exhausted. We will go downstairs and drink a toast to Ron and look forward to coming home late tomorrow night.
Thank you for being there as always.
Kate and Brett
Wednesday, November 30, 2005 9:22 PM CST I'm nervous writing this, afraid that I misunderstood the conversation. Yet, I wrote it down as Brett was talking so I know I heard it right.
No surgery...no 2nd treatment...because Dr. F believes the first treatment worked and the tumors are "knocked down"!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! The IMBG results were good! But how does that gel with the CT and PET scans that didn't look so great? Apparently, the tumors are there but he believes that with patience (there is that word again) we will see the "real results" in 12-24 months. And he believes the "real results" are that the tumors are not able to spread anymore. Essentially, they are there but they are sterilized.
Brett and Kate asked how they should be feeling. "Hopeful" was the answer. Kate asked what she should tell her friends. "That your prognosis is much better."
Her 24 hour urine exam is almost back to normal (not showing the signs of the tumors much anymore).
Of course, he noted that there are no guarantees and as we all know, there never are, but he believes they have bought themselves some time and that some promising treatments are on the horizon. In fact, he is recommending her for another trial using the "inferon" drug that has been getting such positive press.
He is happy with the way she looks (hasn't everyone always been happy with that!), the results of her general physical and the strength she is showing.
This isn't over, paraganglioma never goes away. But this isn't over!! Kate has a lot of fight in her and those tumors are learning all about it!!
Everyone is stunned, happy, grateful. Your prayers and energies are working!! We love you all!!!
Maria
Wednesday, November 30, 2005 8:39 PM CST
Our dearest friend's dad passed away yesterday. We are so sorry that Ron Ohe has died and our hearts go out to Jeff & Alley, Alli, Carol and the rest of Ron's family. We love you guys. We will always fondly remember Ron's famous chuckle. It always brought a smile to our face and he shared it graciously with others on a regular basis. I (Brett) had the pleasure of growing up with Ron, whether it was at church, as a basketball coach- he always had the sharpest coordinated sweat suits, or as a constant in the stands at every sporting event of Jeff and Alli's. We will miss him.
As awkward as it feels to transition this way, we have many friends and family waiting to hear how our meetings went today. Well, we have good news and we have ??, news??. The GREAT news is that I (Kate) do not have to be away from Grant for weeks on end. We will not be having surgery in the near future and the I-131 MIBG scan we did today showed no uptake in the tumors.
What does this mean? Who the hell knows. Brett & I are still trying to get our arms around this information and don't know whether to cry tears of joy or tears of anguish. So, I think we will just sit down and cry - we'll sort it all out later.
Essentially, Dr. F. said that I no longer have uptake of the radioactive isotope - he hopes that this is good and is also hopeful that I have several primary tumors and that there is not as much metastatic disease as thought. He told us to be patient (to be what?) and that we should sit back and enjoy each day. Life holds no promises. There is a clinical trial at Duke that he will check into on our behalf. They are working on a promising new drug for tumors in the same family. He hopes that we can buy enough time until the drug is ready or he hopes that I will be eligible for this trial. Brett & I can't figure out how to respond to all of this news. I asked Dr. F. how we should feel. He replied "hopeful". So hopeful we will remain. I told him that I am a do-er and that I need a next step - again I am told to be patient (I am good at neither definition of this word by the way).
We will try to bring some meaning to this in the near future but tonight we are too exhausted. We will go downstairs and drink a toast to Ron and look forward to coming home late tomorrow night.
Thank you for being there as always.
Kate and Brett
Tuesday, November 29, 2005 6:50 PM CST Congratulations to Karin, Andy and Grace Cebulla on the birth of their new baby, Julia!! She is beautiful!
Brett & I had a great day hanging out and relaxing. We had only one appt. today so it has been nice to just be together. We miss our little man terribly but we know he is in excelllent hands (thanks Grandma Bop!).
Tomorrow won't be so leisurely... we begin the day early w/the surgeon and end the day late w/Dr. F. to review the days findings. I have been feeling very strong and well this past week so we are expecting big things -- miracles even!
Great love and blessings to you!
K&B
Monday, November 28, 2005 11:18 AM CST Kate and Brett are heading to San Francisco today. Her appointments are Tuesday and Wednesday. I will update the site as we learn things.
Since we know the tumors are still there, let's focus our prayers and positive energy on tumor deterioration!! If the radiation damaged the tumors (so they are less vascular), surgery and future radiations are more likely to be effective!
Maria
Tuesday, November 22, 2005 9:02 PM CST We have been learning how important it is not to taunt the thyroid. One of the potential side effects of our treatment is that it may kill off the thyroid. Hypothyroidism is no walk in the park. Bucking the trend as usual, Kate's thyroid has achieved super gland status and has gone over the top in the other direction. Hyperthyroidism from a spouses perspective looks like a combination of taking speed while going through menopause with a little schizophrenia thrown in for fun. This, needless to say, is the last thing that Kate needed at the time but Kate has handled this with her usual poise. We are looking forward to yet nervous about our trip back to SF next week. All of these scans and appointments are a big dose of unwelcome dejavu but are the means to putting this behind us once and for all. We are heading out there with a mixed bag of news, knowing that Kate's scans are seemingly the same but yet her tumor marker is trending down. The hardest part of going back is having to leave our little man behind. He is, as parents know, our absolute miracle and having to leave him to fight on is the cruelest part of this process. He has proven to be a champion like his mother and has taken the turn style of care givers in stride. We do not need to look far for our motivation. As usual, endless thanks for your love and support. Brett
Sunday, November 20, 2005 7:40 PM CST Sorry we haven't updated anyone on the PET/CT from Thurs. We aren't sure how to interpret the results and are waiting for the radiologist to compare this scan to the one I had in May at the Mayo. We do know that they saw more disease in my sternum, another spot in my spine and that there is something funky in my neck and thyroid. It makes sense that the thyroid lit up the scan as they believe I have graves disease and I am hopeful that the other shadows in my neck are from the thyroid issue. This is what we are concentrating our energies and prayers on today - I am a little nervous about the spots in the neck and that they may be more disease. That wouldn't be good. For now, my oncologist says that the news isn't good but it isn't terribly bad either and that we just need to wait for the comparison. We are counting on the results being better than originally thought.
Grant had fun playing w/baby Ana today (Steph & Andy, she is beautiful!!)! I cannot believe how in love I am with this man! He continues to make me laugh and smile - how fortunate we are to have him!!
We ask for your prayers and positive energy for a couple friends of mine - Michele, who is also fighting Paraganglioma and has a five year old - Ron, who is fighting colon cancer and will have surgery tomorrow at the Mayo clinic.
Thank you to everyone. For your prayers and powerful energy. May that love surround and protect your own families. Great love to you! K.
Happy Birthday Nate!
Thursday, November 17, 2005 1:44 PM CST Hi everyone! I am wondering if you know of someone who would like to work as a "mother's helper"/nanny for us beginning in January. My niece Kelsey will be returning to school and unfortunately, we anticipate that we will still need someone to help us with Grant. Because of the radiation treatment I will be receiving, Grant will not be able to attend daycare. If you know of someone, please send us an email at brmortenson@yahoo.com. Thanks!
I had my PET/CT combo scan today. We'll post the results once we get them. We don't meet w/my oncologist until Tues. but we are hoping to get them sooner!
Stay warm!
K.
Monday, November 14, 2005 8:22 PM CST Hi everyone -
Score another one for team Kate! Not only did we have a 40pt. drop in my tumor marker, we also had a good meeting with a new surgeon.
o}"\ ;/.l[['0i'[p/.o;:>ik90 Sorry, Grant wanted to tell you something.
Athough neither side is willing to commit to anything quite yet, the surgeon thought it would be reasonable to proceed with "debulking." He wants to consult w/a few others first, as do we. We still need to talk in greater detail w/the surgeon, Dr. F. and Dr. S. before we decide that it is worth the risk. The surgery is very dangerous due to the vascular nature of the tumors. But, we think this will be the fastest way go kick this thing! We hope to make our decision after our trip to San. Fran.
Many friends have expressed concern that Brett & I don't talk about the "c" in any depth other than factual detail. We assure everyone that we do this by choice. We completely understand the gravity of our situation - all too well. But we have a choice to live our lives to the fullest or waste time dwelling about what might be. The afternoon we were told that my tumors are metastatic I was looking out the window as the doctor was showing the results of my PET scan(of course it was pouring rain - are we sure this is not some horrible, sappy movie?) . Grant was only 14 mths old and he slept in his stroller as we listened to this ridiculous news. I looked over at Grant and decided at that moment I had a choice. Thoughts and words are energy and it is these things that shape and direct our lives. I choose to think and verbalize the positive. Not every moment, but every moment that I am able. The power in our words, in our thoughts, in our energy will dictate much of our experiences. I have decided that I will beat this thing. Brett & I have decided that we will beat this thing. We want all of you to know that we will beat this thing. This is the energy we want to surround us - Thank you surrounding us with your incredible energy - it is the difference.
Love to all of you!
K.
Thursday, November 10, 2005 8:01 PM CST *** Friday: Tumor marker dropped 40 points! Hooray!! Thyroid scan got screwed up... Kate's CT last week interferred w/uptake so the scan was useless. ???***
Hi everyone! Thanks for all of your well-wishes! I have been feeling much better since Dr. E. put me on beta -blockers to slow down my heart. Apparently, my thyroid has gone into overdrive as a result of my treatment. This is not a big deal - we will scan it tomorrow at Abbott and then decide how to fix it. I am optimistic that my thyroid is the culprit behind many of my symptoms. Brett has been calling me his "little mexican jumping bean" for a couple of weeks now. We laughed when Dr. E. asked if I have been jittery or anxious. Well, I enjoyed the latte's while they lasted!
The doctor appt. I had yesterday was also for a pretty benign reason (no pun intended). It will not stop my treatment or harm me in any way - I was simply disappointed by the hurriedness of the appointment and the fact that we did not come away feeling that he had solved our problem. But it is a relatively minor problem thankfully.
Grant continues to amaze us with his humor and vocabulary (obviously he didn't get the humor from me!!). He can already count to 16 and knows his abc's! Despite his less than adorable behavior today, he is the absolute light of my life!
It is so great to hear from all of you but especially fun to hear from some voices in my past! Thanks for writing! Julie, you are hilarious! You have always been a good listener of my Dr. stories..teehee!
I hope all of you have a wonderful weekend! We should receive our tumor marker results tomorrow and get the final results on why my thyroid is hyperactive. We will update once we find out.
Much love to all of you!
K.
Wednesday, November 9, 2005 1:13 PM CST We saw a new specialist this morning and I am reminded of care I received while trying to discover the cause of my stomach pain a few years ago. The doctor was in such a hurry, and although he even knew my "story" he couldn't slow down enough to ask me any questions or hear what I was saying. Repeatedly, he and the nurse misunderstood my reason for being there. Not that he wasn't a nice guy and I am sure he is a terrific surgeon, but we still don't feel we have a plan for my next treatment at UCSF. I am sharing this with all of you as it serves as a reminder that you need to either be your own health advocate or find someone who will do it for you. There is nothing more important. Also, it serves as a reminder once again that I have found an incredilbe group of physicians and nurses. Dr. Engebretsen and her staff, Dr. Schwekowske, Leann, Becky & Dr. F. -- I am so grateful to have found these amazing people. Please, if you haven't found a primary physician whom you can talk with and feel listens to your concerns, do so.
With all of that said, we did confirm that I do not have any tumors in the area of concern. It's about time that a tumor isn't the cause of a problem :).
Be well!
K.
Sunday, November 6, 2005 8:47 PM CST Ultrasound went pretty well - although it looks as though there may be a few more tumors on my IVC (inf. vena cava), none have invaded the wall and the blood flow is ok. We are hoping that some of my symptoms are due to an over-active thyroid. My pulse has been around 120 - 136. My doc. said that it is as if I am constantly running. We started some meds. Friday and will do more tests later this week. We are having many consults over next two weeks, including a surgeon. I want to be sure that we aren't missing any options so we are getting a second opinion about surgery (Mayo doc. said too advanced & dangerous). Blah... Blah... Blah...
As we waited for some blood work, a very intoxicated young man stood in the lobby. After talking with him for a moment, he turned to the receptionist and told her "I need to see a doctor. I think my circumcision has come undone!"! We got our laugh for the day!
We went out to Jen's last night to hang out w/Jen, Mindy, Julie and respective families. Grant had a blast - there were 6 kids under the age of six... It was great to spend some time together. I am so grateful to have such amazing friends.
Speaking of amazing friends, it is Karin Cebulla's birthday tomorrow (Monday)!!! HAPPY BIRTHDAY KARIN!!! I love you!!!
Much love to all of you and we wish you a wonderful week!
K.
Thursday, November 3, 2005 8:30 PM CST Every day presents us with new knowledge and new thoughts to sift through. Today, we learned that the journey will take 1-2 years and we need to focus on the long term and not look for nor become distraught over short term results. Kate's CT scan shows that the tumors have not disappeared, nor shrunk. Some of them are a little larger. No new ones were mentioned (nor did we ask so we're not sure).
Dr. F. (in San Fran) did not seem alarmed and stated that this is a long term treatment plan. He wasn't thrilled by the results, but wasn't openly discouraged by them either.
Kate will definitely need a second radiation treatment. They need to be 6 months apart so it won't be before the end of January. The good news is that we know what to expect this time so we can be better prepared. The bad news is that we know what to expect this time so we know what's coming. (Kind of like having babies, right Mom's??)
Dr. F. is not convinced that the results of the CT have anything to do with her current stomach pain so he is having her checked for normal, routine things (like bladder infections). So, hopefully, after a few days, Kate will be back to feeling better and her energy level will get back to normal.
Where to focus your positive energies: - Giving Kate, Brett and all who love them the patience to take this journey one day at a time. (We are not patient people!!!) - Giving thanks for someone like Kate who continues to be a positive, loving person with a tremendous attitude. - Thinking about the celebration in 12-18 months when we all get together and DANCE!!! and celebrate Kate's remission.
Love and thanks to all, Maria
Thursday, November 3, 2005 7:52 PM CST I was never one to believe in superstitions but I can tell you that we will never set up another test or Dr. appt. on a birthday. Unfortunatley, we didn't break the birthday curse.
My CT results show that the tumors have grown a little - only a couple, and I have many, are stabalized. The tumors don't necessarily explain the pain I have so we will see a doc tomorrow for a abdominal ultrasound w/doppler (which will show if the tumor on my vena cava is suppressing blood flow) and a full exam to rule out the normal stuff (unfortunately my favorite doc. is out tomorrow so I will see one of Dr. Engebretson's partner - of course Dr. E. is driving everything and will f/u tomorrow even though it's her day off!).
Dr. Fitzgerald (CA) didn't sound too concerned about the growth - he isn't happy about it but he didn't sound as though this is the end of the road either. I will definately have to do another round of radiation. The earliest they can do it is the end of January (I must wait 6 mths btwn treatments). It's not the actual treatment I dread, it is the fact I will have to be away from Grant for three weeks again. Thinking about the time away is the only time I feel sorry for myself...
Ok, so my brain isn't working well tonite otherwise I would try to come up w/a joke to tell as we can't leave it on a negative note! So, if someone could help me out and write in a really good one, I would appreciate it! Take care, thank you for all of your prayers and well wishes. Love, K. (sorry for all the spellig errors!)
Wednesday, November 2, 2005 8:24 PM CST I am sorry to say that one of my mom's very best friends, Peg Schwandt died from cancer on Sunday night. She was only 58 and was diagnosed just 5 mths ago (the day they called off my surgery). She was a wonderful woman and a fantastic friend to my mom and our family. Please keep Peg, Sherri, Pete & the rest of her loved ones in your heart and thoughts. I am so very sad that such a wonderful woman is gone.
We have a CT scan tomorrow so let's hope that the birthday curse of bad news is OVER (each time we have received bad news, it has been on someones b-day)! We moved up the scan from the 17th due to some pain I have been experiencing. Yikes - we are really hoping for some good news. So Paul, let's make your birthday extra special this year!! Happy Birthday!!!
We love you Peg!
K.
Monday, October 31, 2005 3:28 PM CST Happy Halloween everyone! Grant will wear his cousin's clown costume tonight (Kelsey & Kyle's). He is still working on his knock-knock joke to tell - he almost has it down. His only problem is that he is so excited to tell it that he doesn't let the recipient of his joke ask "who is there" and "boo who"! He tells the whole thing (almost anyway, he usually forgets the punch line!).
Grant's joke: Knock Knock! Who is there? Boo! Boo Who? Don't cry. It's just Grant!
Tumor markers are next week again. PT/CT will be on the 17th and we will meet w/my ocologist on the 22nd (can't wait to see you Becky & Leanne!!!). We will leave for tests and mtgs. in San Fran. on the 28th.
It is our hope that we wiped those suckers out - however if I had to bet, I would say that the tumors have shrunk dramatically but that they are not yet gone. Emphasis on yet.
A huge thanks to Karin, Alley & my book club folks for having the holiday shopping party!!! I love the purses and I can't wait to see the cards you've made!
Have a great Halloween! K.
Thursday, October 27, 2005 8:12 PM CDT Hi everyone! Sorry for the lack of updates but our lives have been quite ordinary as of late - and we love it! November will bite us with a bit of reality again. It has been nice to have a full month off from Dr. visit's. There are even moments when we forget all about the "c" and life feels normal. We are filled with trepidation & excitement to hear how the tumors are fairing. We should be able to report preliminary results in a couple of weeks. In the meantime, I have joined a Qigong class. The type of Qigong which I am taking is a form of medical qigong which helps balance energy within the body. I have read that pp. who use qigong along with standard treatments will have less side effects and a faster recovery. I am hoping that it helps me to slow down as well as focus on eliminating the tumors that have made my body their temporary home. I hope that you have been able to get out and enjoy this incredible fall!! Love to you! K.
Thursday, October 20, 2005 3:01 PM CDT Mom, Grant & Maria |