Hello to all,
We hope that you had a good Memorial Day weekend. Ours was great. Weather-wise, it felt more like the 4th of July than Memorial Day. It was jam-packed with fun for the kids and us.
We took the chance to get away to Michigan for the weekend. Kari's surgery is this Wednesday so we were all looking for a good distraction. Plus after a week of final prep for surgery, a broken pipe complete with flood on our first floor and a strange 3:00 AM visit from a critter in our dryer vent, we needed to get out of town.
Kari's family has a home in Saugatuck, MI. From our place in Oak Park, The Lodge is an easy 2 1/4 hour drive. We left Thursday night, strategically timing our departure to guarantee that we only had to drop the sleeping kids in their beds in their rooms when we pulled into the garage.
Friday started with breakfast and running around the yard. James found a handful of large, fuzzy caterpillars and took to caring for them in the wagon in the garage. For some reason, they were content to hang out in the wagon and we were all surprised when they started eating the leaves that James brought to them.
After James' fuzzy friends were squared away, we went into town to play at the park in downtown Saugatuck. Any chance the kids can get to run and play, they seize. James made friends with some older triplet girls and they chased each other around the park. James certainly likes the ladies.
Here's Katie being generally cute and photogenic.
James became fascinated with the monkey bars and wanted nothing more than to master them. His new triplet, girl friends were all over the monkey bars but James won't admit that is why he wanted to learn.
After that, we took Katie back to the Lodge for a nap. James and I went off to climb Mt. Baldy as an adventure. Saugatuck has an interesting Cold-War relic smack-dab in the center of everything. There is a large sand dune between the main beach and the downtown area called Mt. Baldhead, or Baldy as the locals affectionately refer to it. At the top of the dune is what used to be an early-warning RADAR station, designed to protect us Chicagoans from long-range Soviet tactical bombers. Needless to say, it sits idle now. They mainly keep it for kitch value and to decorate around Christmas.
The white ping-pong ball above the tree line is the old RADAR dome.
To get to the top, there are 304 stairs that you need to climb. James and I counted each and every one. He did a great job going up, hiking through the woods and dunes. He also made it down all by himself with only one stop to snack on some fruit snacks for energy.
Here he is on the way up.
Here's the view from the top.
When we started on our hike from the top. James told me to take a picture of the map. He said that we could look at on my camera just in case we got lost.
Here is James on our descent down the dune on the back side that faces Lake Michigan.
After we hiked down the lake-side of the dune, we took another path back through the woods, never having to refer to the map carefully stored in the memory card in my camera. 304 stairs down to get to the car and back to the Lodge.
Saturday morning brought breakfast, more playing in the yard, tending to the caterpillars and the idea to teach James to ride his bike without his training wheels. After a little maintenance, James and his Papa Bede took off the training wheels, and the lessons began.
The first few runs on Saturday went okay. Here are the highlights. (since we were riding bikes, we couldn't keep Katie out of the action.)
We gave up after a little while but picked up it again Sunday morning. After a little more practicing, he took right to it. Check it out...
...and...
That didn't take long.
After we watched James spin circles through the cul-de-sac, we packed the kids in the car and headed off to my sister and brother-in-law's house about an hour away. They have a place with access to Scott Lake. It is a clean lake, without a lot of boat traffic. It was great pre-kids when we all used to ski and tube. Post-kids it is just as nice. We took a picnic lunch out on their pontoon boat and cruised the lake.
James had a chance to show Uncle Marc how to drive.
We then donned our life jackets and heaved over the anchor so that we could lounge in the water. James really liked this but he was freaked out when the waves came over him from the other boat traffic.
Little Miss Katie was a completely different story. We had to physically retrain her from jumping in the water while everyone else was getting in. She kept saying "I jump in!" over and over until Kari took her in. Once she was there, she was unflappable. She gladly drank about a gallon of lake water and cheered on the waves. She proudly told everyone that "I am swimming", over, over and over.
After a long day of boating, playing at the beach and having all of the cousins hang out together, we packed two exhausted kids in the car and plopped them into their beds when we made it back to the Lodge.
We woke up early this morning to strong thunder storms. Remarkably, the kids slept through everything. After breakfast, we went outside after the rain broke to watch James ride his bike again. When he went to check on his caterpillars, James was excited to show us that they they had started to create cocoons in the wagon. We didn't see that one coming.
Our drive back was longer than usual with heavy rain and construction traffic. Katie napped a little but they were both good for the most part.
We're back unpacking and cleaning up. We have a long week ahead of us. It was good to get away and we all needed this weekend.
We'll keep all of you up to date as Kari heads into surgery on Wednesday. She has her pre-op appointment on Tuesday. They will let her know the actual surgery time then.
Take care.
Jay
James graduated from preschool today! It was such a cute afternoon, with a little graduation ceremony, a picnic and a visit from his teacher that is on maternity leave and her beautiful baby girl. James also got an award for being the "Class Collector." I.e. he picks up stuff everywhere they go to add to his "collections." Most of his collections end up in the bottom of the washing machine, but if you know James there are little places all around the house where he keeps his "collections." I hope he doesn't end up an episode of Hoaders one day!
On a more personal note, my surgery is one week from today and I am getting a little nervous. We are planning on going to Michigan tomorrow night for a few days to enjoy some time as a family. I hope it works as distraction, because even today, I couldn't help saying a little prayer to God as I was watching James "graduate" that I would be able to see him and his sister graduate from lots of things. I know no one has a guarantee to see or do anything, but when faced with something like this, it is both a blessing and a curse. It gives you time to say and do things that you might not ever, but it makes everything have a little bit of bittersweetness too. Hopefully, when I am through with this year, I will no longer feel this way. A friend of my mom's told her that I should never give cancer any power, it has no power. I try to remember this, but on days like today, it is kind of hard. I will make it through this though.
Hi everyone. I thpught I'd give you an update since it has been a while. For a few weeks now I have been taking tomaxafin. The first week was ok, but the second week was a little rough. I was cold, then hot, achy all over and very tired. I still kind of feel like my body is hosting an internal war, which I guess it kind of is. This past week I had an ultrasound and another biospsy and mammagram as part of the research study. I also took my first dose of the research medication tonight. So far, so good. I take it tonight, Monday and Tuesday, then have Wed-Sat off, then take it Sun, Mon and Tues and that takes me to Wed June 2nd, my surgery date. I am all done with tests now until my surgery, with the exception of presurgical testing that I need to complete on June 1st. This is standard practice for anyone having major surgery, or do I understand. My surgery will be about 6 hours long, or so I have been told. I have not really been thinking about that yet, trying to just focus on one day, one moment at a time. I am sure as it gets closer, I will get more and more nervous. I just hope that I can stay healthy between now and then, so the surgery can take place as scheduled.
Now, to recap the weekend: On Saturday my friend Marlene hosted what will probably be my last CAbi show this season. The season ends in June, but I am going to continue to rep CAbi and look forward to the fall season starting in August. It was such a nice morning, thank you Marlene! I had a great time helping everyone find cute clothes. Thank you also to my mom who came and helped me! It was nice to see so many friends and hear so many caring words and hear that so many people are praying for me. It is so touching. In the late afternoon, Jay, James, Katie and I walked to the park and the kids played. I was pretty tired by this point and pretty much just sat there and watched them play. I was happy to watch them, but sad that I was so tired that I just couldn't push myself to play with them, given I still had a long walk home. And apparently I was very tired as I slept 10 hours last night! Today we had lunch at Uncle Julio's with our good friend Maria. It was fun to sit outside, enjoy talking to a good friend and I love that place! Then we went to my brother's and the kids played inside, and then we walked to a local park where the kids played more. James brought his bike and enjoyed riding it "on the trails" at the park. Then we went to the Tastee Freeze and got ice cream! yum! Jay took some great pictures which I will ask him to post in the next few days. Tomorrow he is off to Wisconsin to attend a photo shoot at a car resto shop on ISIS that will be in Car Craft magazine in a few months, so I hope I continue to feel ok, since I am on my own Monday and Tuesday night....
So, her is a picture of Miss Katie after her nap today. This has got to be the craziest nap hair I have ever seen out of her. She hardly has hairs on her head, but they are really out of control after today's nap! I would also like to point out that she took a nap in James' bed. For some reason, my little princess who has her own bed with beautiful petal and brown bedding from Restoration Hardware Baby & Child, courtesy of Mama Diane, loves to take naps in her brother's bed.
This is a picture of Katie's baby. Before she took her nap today, she first "put" her baby to sleep. She wrapped her up in brother's Bears pretty (that's what he calls blankets, don't remember why) rocked her back and forth, sang twinkle twinkle little star, dropped her on her head, picked her back up said I'm sorry baby, wrapped her back up, gave her a kiss, and put her to bed. It was the sweetest thing I ever saw... I love my sweetheart Katie!
Lots of people have a love/hate relationship with Oprah. Either you love her, or you hate her.... I saw Oprah once, my mom and I went together. I would like to say it was a wonderful day, but only in hindsight can I say it was truly a wonderful day. You see, we went the summer after I graduated college and I was looking for a teaching job. My first "real job." I sent out lots of resumes and had gotten a call for an interview from Deerfield Public Schools for a 4th grade position. It was the grade I wanted to teach, a wonderful school and in a great location to my family and friends. I was so excited and interviewed. I walked out of the interview feeling confident as I was asked to also interview with the superintendent of human resources. All signs pointed to being hired and I was so excited. Then, two weeks passed, and I heard nothing. At my mom's urging, I called the principal to follow up. He picked the morning that I was getting ready to go to the Oprah show to call me back and tell me that he hired someone else for the position. I was devastated as I had my heart set on this job and didn't know what I was going to do now. I tried to recover and get on with my exciting day to go to see Oprah, but we subsequently missed the train downtown, had to drive and just made it to the Oprah Show taping. As much as I wanted to enjoy that show, there was so many things that had gone wrong that day that my head would bounce from listening and enjoying Oprah to thinking I didn't get that job and I'm going to have to live in my childhood bedroom forever. Today I got a forwarded email message from an Oprah show where she interviewed Maya Angelou, where Maya had to say the following:
'I've learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow.'
'I've learned that you can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights.'
'I've learned that regardless of your relationship with your parents, you'll miss them when they're gone from your life.'
'I've learned that making a 'living' is not the same thing as making a life.'
'I've learned that life sometimes gives you a second chance.'
'I've learned that you shouldn't go through life with a catcher's mitt on both hands; you need to be able to throw some things back...'
'I've learned that whenever I decide something with an open heart, I usually make the right decision.'
'I've learned that even when I have pains, I don't have to be one.'
'I've learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back....'
'I've learned that I still have a lot to learn..'
'I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.'
Reading this made me think of that day I saw Oprah. Especially the line where life sometimes gives you a second chance. Because you see, about a month later I got another call from that Deerfield principal, on a Saturday. He was about to go on vacation and the day before he had gotten notice from a second grade teacher that she was not returning and wanted to know if I could come in and discuss a second grade position at his school. So I went in and got the job. It turned out to be the best position for me, gave me teacher friends that I have until this day and taught me so many things. In hindsight, 4th grade would have been quite a challenge for me to teach and 2nd grade was really the perfect fit for me. That Oprah show day, was actually a wonderful day for me because it left me available for the 2nd grade position. That is only something I learned only in hindsight. From that expereince I learned, and have since tried, to not let something bad ruin a whole day, as lots of things happen in a day, both good and bad.
Reading the last line of what Maya Angelou had to say made me think of all of you. Whether you know it or not. what you are saying and doing for me throughout this journey will never be forgotten. I may forget what exactly you said or did, but I will NEVER forget how you are making me feel. If there is a silver lining in this whole experience, it is that I am getting the chance to tell people how I feel about them, and knowing just how much support my family and I have from so many people who care about me.
At the end of this journey, I am sure that in hindsight, I will have lots of things I have learned. As I travel this journey I will try to keep in mind a lot of the things that Maya Angelou had to say above, as they have the wonderful ring of truth.
This is James' jet pack that he made at school last week. When he was telling me all about it he made sure to tell me that he used "Goose Tape..." I kept thinking and asking him what... and then I realized he was referrencing Duct Tape! Get it- duct tape, duck tape, goose tape! I love my Jamsey James.....
Hi! I used to love Fridays! It meant Jay would be home for the weekend soon, James would have a playdate with his friend Nick as their school schedules didn't conflict, and I could have a playdate with him mom, my friend Alex. And when it was nice weather, Alex and I would sit outside in chairs in the late afternoon and let the kids play in the courtyard as we counted the minutes til 5pm... Other neighbors would join us and quite a few times Jay would come home to quite the impromptu dinner party, complete with wine (it was after 5 after all) in the courtyard. It was really fun!
Now, it seems my Fridays are spent at Loyola. Today I have another test and another doctor appointment. Next Friday I have another test and another doctor appointment. See a pattern?!?! I have been on tomaxafin for a week now. So far, so good. Knock on wood. Next week I will start the study drug. I hope I feel well on that drug too.
I hope I continue to feel well as next Sat my friend is hosting a CAbi party for all her friends, and it will probably be my last one before my surgery. It is kind of working out nicely as the season ends in June and then fall doesn't start until August. At first after being diagnosed, I thought maybe I'd have to give up my CAbi rep status, but after talking to other's who had cancer and the same surgeries I will have, I am happy to say I will continue repping CAbi! I am very excited, as I understand the fall line is incredible, and I think the distraction from treatment will be just what I need!
Enjoy your Friday and keep my family and me in your prayers! Thank you!
Okay...
I made it back from my exotic trip to mid-Iowa, unscathed.
Here are some pictures from the kids' first horse rides from over the weekend.
We left Kari and Katie to run around the corall while we watched Paul & Nancy saddle the horses. Here they are hanging around on the fence.
Of course, it started to drizzle while we were getting the horses ready to ride.
But that cleared up in a few minutes.
James kept commenting on how big they were, much bigger than the ponies that had ridden at the local street fair. He was a little scared to ride the horses but had absolutely no problems feeding them. Soon the horses figured out that James was an easy target for carrots.
Katie, however, had absolutely no problems getting on the horse and riding. She held on tightly, with a grin on her face.
I am uploading the videos. So watch for one more post from the weekend.
Jay
Greetings to all,
I am typing this from a hotel in Mason City, Iowa. Ah... my life is just filled with all kinds of exotic travel.
Like we said in our original post, we want to make sure that we are covering just as much good in our lives as we are covering Kari's victory over cancer. We just need to push ourselves to keep this up.
We spent last Saturday with Kari's Aunt Nancy and Uncle Paul at their home in Antioch. It was a good distraction to get away for a day and let the kids play. They have a beautiful home on a great piece of property. Outside of spending some time with the family, we took the chance to have Nancy give Katie her first haircut. After that, they let the kids ride their horses. Thanks much to Paul & Nancy.
So... here are a few videos from Katie's first haircut. All in all, she did pretty well.
We then took the chance to get James' hair cut also. He is a zombie in this video and that's my fault. His allergies have really been bothering him. I knew that the horses plus the dogs would probably bother him so I preemptively dosed him up with Benadryl. In the frenzy, I may have given him a little more than the recommended dose. You can tell that he a little off since he is sitting so still.
After James took an unexpected and long nap on the couch, we went outside to ride the horses. I'll post pictures and videos from this when I get home tomorrow.
Thanks again to Paul & Nancy for letting us come out to visit. It was a great distraction for us.
Jay
Hi everyone, it's Kari. The first thing I want to say is how overwhelmed I am with everyone's support and prayers. I am so touched by your kind words, cards, prayers and actions. I have heard over and over how strong I am and how I can beat this, and I will. I have being keeping all your cards and emails so on those days when I am feeling down, and feeling like I can't go through this (which I am sure there will be through this year plus journey) I can reread them again.
A few updates from the past week. I spent from 8am to 4pm on Thursday at the hospital having lots of tests. Bone scan, full body scan, tests with contrast, tests without contrast, etc. and the good news is, there are no signs of cancer in any other part of my body! I am so happy to know that I only have to battle this in my right breast and lymph nodes. On Friday I went back to the hospital at 10am and left at 4:30. In the morning I met with the genetic counselor and in the afternoon it was back to the cancer board. I am very impressed with Loyola and how they handle their cancer patients. There is a whole cancer center that has pretty much all the things cancer patients would need (lab work, treatment rooms, social workers, and more) all in one place. It is so nice not to go back and forth and have to explain to everyone why you are there, what you need, etc. The other thing I really like is the cancer board. All the doctors in all areas of treating cancer get together and review patient info and then decide on a course of action. It is so nice not to have to repeat everything and wonder if one doctor is going to talk to another doctor. They also put you in your own room for the afternoon and then all the doctors and nurses come around individually to examine you, update you and tell you what is next. It is really nice.
After talking with everyone on Friday, and conferring with my family, I have decided to take part in the drug trial. For the next three weeks, I will be taking a combination of drugs and getting a series of tests done to participate in the study. My surgery is set for June 2nd. After the surgery, I will be spending two nights in the hospital and then coming home. My mom will then stay with me for at least a week to take care of me, and be my nurse. Good thing she is one in real life, and doesn't just play one on tv! I am nervous as all the doctors and nurses are saying that it will take 4-6 weeks for me to be able to feel ok enough to take care of my babies. And of course, even after those weeks, I still won't be able to lift more than a milk jug. Clearly, my children weigh more than a milk jug. I guess that I will just have to keep leaning on my friends and family, and accept help.
Okay Folks,
I have been doing a little research on the clinical trial that Kari may participate in. From a cursory look, it is promising.
This link will take you to an article from late last year that gives a good overview.
http://www.reuters.com/article/idUSTRE5BD3AD20091214
Here are the Cliff Notes:
Studies in animals and women with advanced breast cancer showed the experimental compound MK-0752, under development by Merck & Co Inc, was able to kill off cancer stem cells that linger in the breast after chemotherapy.
Other articles talk about how the combined cocktail of MK-0752 and traditional chemotherapies dramatically reduce the likelihood of the cancer returning later in life.
I'll post more on this as we learn more.
Jay
Kari is upstairs working on scrapbooks and the kids are asleep. I am procrastinating on doing some work in the office downstairs so I thought that I would update the blog.
We want to thank everyone who responded to our email from Friday. We continue to be overwhelmed with the support and words of encouragement that we are getting from you.
We had a nice relaxing weekend, which is what we needed after Friday and in preparation for this week. Kari's parents took the kids for the weekend. They had a full house with James, Katie plus Rob, Audrey and their twins Caroline and Olivia. Rob painted the girls' room so they were looking to get away from the fumes.
This video will give you a flavor of what Kari's parents had in store over the weekend with James, Katie, the twins, Rob and Audrey staying at their house. It was taken after we spent the morning visiting great Mama for an early Mother's Day brunch.
Kari and I just took some time to be together and decompress. We drank some wine with the neighbors last night, slept late this morning and went for a long bike ride. It was a good distraction. This is going to be a long week for Kari. Thursday and Friday are the pretty heavy days, with Thursday being the most demanding. She starts at about 8:00, spending the day bouncing around Loyola's campus, ending about 3:00. Over her travels, she will get a few MRI's, a bone scan, a CT and meet with a few more doctors. The whole goal of Thursday is to do all of the testing to make sure that it hasn't spread any further.
We know that it is in her right breast and the sentinel lymph node. Her chest x-rays taken last week were clear, so that's a good sign. All of the tests and information collected on Thursday will go into our meeting with Dr. Albain, the oncologist, for Friday. We'll start discussing a treatment plan with her then.
We have an opportunity to get Kari into a clinical trial for a new cancer treatment drug with Merck. This new notch inhibiting compound has shown to dramatically decrease the likelihood of cancer returning when combined with traditional chemotherapy. Dr. Godellas is amazed with the clinical results so far and is strongly encouraging us to participate in this study. We need to do a lot more research for ourselves but this looks promising. The only drawback to participating in this will be that they would need to do some additional tests on her in advance. It would delay any surgery by a few weeks.
Outside of that, we are trying to figure out how to handle this with James, who will be 5 in August. If all goes well, Katie will never remember any of this. James is smarter than the average bear and asks a lot of questions in general. We have to be prepared for that. We have been given a lot of good guidance on this but still need to come up with the best message. We probably won't talk to him until we know when Kari will be going into surgery. Until then, our message to him is that Kari is having some tests done.
Thanks again to all for your overwhelming support. We'll keep you all up to date.
James became fascinated with the monkey bars and wanted nothing more than to master them. His new triplet, girl friends were all over the monkey bars but James won't admit that is why he wanted to learn.
After that, we took Katie back to the Lodge for a nap. James and I went off to climb Mt. Baldy as an adventure. Saugatuck has an interesting Cold-War relic smack-dab in the center of everything. There is a large sand dune between the main beach and the downtown area called Mt. Baldhead, or Baldy as the locals affectionately refer to it. At the top of the dune is what used to be an early-warning RADAR station, designed to protect us Chicagoans from long-range Soviet tactical bombers. Needless to say, it sits idle now. They mainly keep it for kitch value and to decorate around Christmas.
The white ping-pong ball above the tree line is the old RADAR dome.
To get to the top, there are 304 stairs that you need to climb. James and I counted each and every one. He did a great job going up, hiking through the woods and dunes. He also made it down all by himself with only one stop to snack on some fruit snacks for energy.
Here he is on the way up.
Here's the view from the top.
When we started on our hike from the top. James told me to take a picture of the map. He said that we could look at on my camera just in case we got lost.
Here is James on our descent down the dune on the back side that faces Lake Michigan.
After we hiked down the lake-side of the dune, we took another path back through the woods, never having to refer to the map carefully stored in the memory card in my camera. 304 stairs down to get to the car and back to the Lodge.
Saturday morning brought breakfast, more playing in the yard, tending to the caterpillars and the idea to teach James to ride his bike without his training wheels. After a little maintenance, James and his Papa Bede took off the training wheels, and the lessons began.
The first few runs on Saturday went okay. Here are the highlights. (since we were riding bikes, we couldn't keep Katie out of the action.)
We gave up after a little while but picked up it again Sunday morning. After a little more practicing, he took right to it. Check it out...
...and...
That didn't take long.
After we watched James spin circles through the cul-de-sac, we packed the kids in the car and headed off to my sister and brother-in-law's house about an hour away. They have a place with access to Scott Lake. It is a clean lake, without a lot of boat traffic. It was great pre-kids when we all used to ski and tube. Post-kids it is just as nice. We took a picnic lunch out on their pontoon boat and cruised the lake.
James had a chance to show Uncle Marc how to drive.
We then donned our life jackets and heaved over the anchor so that we could lounge in the water. James really liked this but he was freaked out when the waves came over him from the other boat traffic.
Little Miss Katie was a completely different story. We had to physically retrain her from jumping in the water while everyone else was getting in. She kept saying "I jump in!" over and over until Kari took her in. Once she was there, she was unflappable. She gladly drank about a gallon of lake water and cheered on the waves. She proudly told everyone that "I am swimming", over, over and over.
After a long day of boating, playing at the beach and having all of the cousins hang out together, we packed two exhausted kids in the car and plopped them into their beds when we made it back to the Lodge.
We woke up early this morning to strong thunder storms. Remarkably, the kids slept through everything. After breakfast, we went outside after the rain broke to watch James ride his bike again. When he went to check on his caterpillars, James was excited to show us that they they had started to create cocoons in the wagon. We didn't see that one coming.
Our drive back was longer than usual with heavy rain and construction traffic. Katie napped a little but they were both good for the most part.
We're back unpacking and cleaning up. We have a long week ahead of us. It was good to get away and we all needed this weekend.
We'll keep all of you up to date as Kari heads into surgery on Wednesday. She has her pre-op appointment on Tuesday. They will let her know the actual surgery time then.
Take care.
Jay
