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Tuesday, October 21, 2008 2:11 PM CDT Hey everyone!
I decided to create one of the newer websites on CaringBridge. I don't know if I like it better or not yet. I posted my last update on the new website. Let me know if you like this classic version better, or the new version.
The new site is caringbridge.org/VISIT/jodieclark.
You can click on the link below.
Let us know how you feel.
Jodie :)
Thursday, September 18, 2008 11:32 AM CDT Hello everyone!
I apologize for taking so long to update the site. We are all doing well here in sunny Florida. Everything worked out for our family in an amazing way. For those of you who don't know, we live in League City, Texas, which is 25 miles outside of Galveston (actually it is right in between Galveston and Houston) and 10 miles from Galveston Bay.
As Ike (the third hurricane to be headed our way this summer) was down around Cuba, we heard that another hurricane might be coming our way but after one weak tropical storm and one near miss, I wasn't too worried. Matt was to leave for St. Pete, Florida, on Friday, and I had just gotten my sling off and started some physical therapy after six LONG weeks of not being able to use the muscles in my shoulder. I really didn't think it was going to come our way, and if it did, everyone in our neighborhood told us we didn't need to worry, but then on Wednesday, we all started to get worried when the schools closed Thursday and Friday and boards started to go up on windows. I told Matt there was no way he was leaving me during my first hurricane with the use of only one arm! He was in charge of the security for another small IWC convention and really couldn't just not show up, so we decided to board up our windows and hit the road for a 17 hour drive to Florida. We were really blessed to have just bought a new-to-us Honda Odyssey with a DVD player and lots of inside room and good gas mileage just a week before the storm! It made the trip so nice. As we followed the highway around the Gulf of Mexico we encountered Hurricane Ike's wind, rain, and flooding, but after two days of driving, we made it to our destination!
On Saturday, we found out that we were spared any major damage, but we lost a few parts of our fence, a metal shed in our backyard, the willow tree on the side of our house (I loved that tree!), and a few new palm trees that Matt had just planted the week before. No damage to our house and no flooding. We are in one of the highest parts of League City and our house has the highest wind resistence rating, so we were pretty confident that our house would be okay. What I didn't want to endure was the aftermath without power. Our electricity was off from Saturday morning to Monday afternoon, and because we let a neighbor use one of our generators, they came over and kept our fridge and freezer going and we didn't lose any food. Right now, one of the guys that Matt works with and his family are staying at our house until their electricity comes back on. From the sound of it, we were very lucky to have power back so quickly. We are so glad that we have been able to help someone, because being so far away when so many are going through so much is really hard.
Especially when we have turned our evacuation into a vacation! The place where we are staying is a beach resort that has three different pools, acres of white sand beaches, loads of kids activities, paddleboats, and aqua trikes. We were able to upgrade Matt's room so we have two queen-size beds and a pull-out couch and a small kitchenette. This has allowed us to save money by making our food and also by not having to leave the hotel for "recreation." The kids go swimming and to the beach right from our room. It has been so ideal as my shoulder is definitely still a factor in what I can and cannot do and Matt is still working every day from 8 am to 5 pm. The kids' schools are closed until at least Tuesday, so we just can't believe how blessed we were to be able to have this wonderful vacation. We will be leaving Saturday morning for home and plan to arrive Sunday night.
As far as Matt's office, it is in downtown Galveston and right now Galveston is closed until further notice, so he is not sure if he will have a different office for awhile or if he will be working from home.
It is amazing to me that Galveston has been so damaged. To have driven around and been in a place where there are homes and businesses and business people and tourists, and then to see how it has been devastated is just surreal. I can't imagine what we would have done if our house had been destroyed like those in Galveston. Where would we go and what would we do? We continue to pray for all those people who have been affected by the hurricane.
The kids had just started school at the end of August, and seem to be doing well. Tanner is doing great at the new high school at San Jacinto college. He has had a lot of homework and has had to stay up late a few times already trying to get it done. As he is a freshman, he is starting early-morning Seminary (a church class that studies scripture each day) at 6 a.m. Once again we have been very blessed to live three blocks away from the home where Seminary is held, so Tanner WALKS every morning! I am holding my breath that this teacher teaches and doesn't move for the next eleven years until Katie is done! Hayden is starting 7th grade and playing the barritone in the band and tight end on the 7th grade football team. (Can you believe they actually have laundry facilities for the football team at the intermediate school?!) As always his charisma is a blessing and a curse, and he thinks he is picked on because he doesn't have a cell phone and can't see PG-13 movies. Only three more months for those movies, Hayden! Emmy is in the 5th grade, which is the oldest class in elementary school here and very excited about her new teachers. She has a team of three teachers and her science teacher is really making a big impression on her. She makes up songs for them to sing in order to learn their lessons. For those of you who have young daughters, one imparticular is to the tune of Hannah Montana's "Everybody Makes Mistakes" but it says, "Everything stays the same; except for the thing you change; Everybody knows what I'm talkin' about;...Science has to be perfect; to get the right answer; and average everytime; Science has to be perfect." She goes around singing it all the time and actually used another song in a practical application the other day. One cute story about Emmy...after driving for 1 1/2 days and 500 miles we arrived in Mobile, Alabama. As we were driving through, we saw a battleship off to the side of highway and Emmy said, "Is that the battleship we went to with the Gees?" That battleship is about 20 minutes from our house in League City. Katie's teacher is really great too, and she seems to like her. She is still a mama's girl and always wants to know where I am and what I am doing. She told me the other day that Emmy told her she wasn't "independent" because she doesn't like to sleep alone in her own room. I told her she was just social and liked to be with people. She is a sweetie, and is usually humming or singing if she is alone.
By the end of the summer, I wasn't sure if we were all going to be alive. After six weeks of having a mom in a sling and not being able to do much, they were tired of even the sound of each other breathing. We tried to get them out as much as possible, but...school was a welcome distraction.
My shoulder continues to do better, and for the next six weeks I am to work on stretching excercises for the muscles in my shoulder. The pain has gotten worse only because I am using it now, but it is definitely not the pain that I had endured prior to surgery. During the surgery, they found that the cartilage was no longer attached to the ball of my shoulder, which means I had absolutely no mobility in my shoulder at all. So now, I am enjoying a few degrees of mobility, but the doctor said I will probably never have much more than 90 degrees. I will be happy with anything. It is amazing to me to know the miracle of modern-day medicine. If you all could see my x-ray it would take your breath away. It looks like a huge ice pick or railroad tie was driven about three or four inches down the center of my humerus. I was very surprised at how small the piece of bone was that they removed from the ball of my shoulder. It is an amazing operation. My left shoulder has also become sore with limited mobility from overuse, but I am doing physical therapy on it to help with that. I am anxious to update one day with a message that says, "I feel well with little or no pain, anywhere. Nothing to complain about," but then maybe the Lord's blessings wouldn't be so evident.
Thank you all for caring and your prayers. As you can see, we have been blessed through the recent hurricane. We are ever grateful for the power of prayer and for the evidences, large and small, of the Lord's hand in our lives.
Love to you all!
Jodie
Wednesday, July 30, 2008 5:22 PM CDT It has been about three months since I last updated. Every once in a while I will talk to a friend I have not seen or heard from, and they will mention they still check this site. Sorry to the many of you who still do. Part of us wants to move away from doing this and just try and live a normal life, but it kind of remains a part of who we are, and it is our link to so many of our friends and family who helped get us through the tough times. I sometimes worry we are on like the 15 season of Seinfeld or something and no one would be interested anyway.... (bad joke I guess, but anyways I think you can understand). Many people do blogs just for fun now anyways so we continue......
Well, my other concern is that I don't only want to put down the struggles, but also the good times. This is a mixture of both. Jodie finally had her shoulder replacement surgery on July 23rd on her right shoulder. She had developed a pretty severe case of AVN or Arterial Vascular Necrosis from all of the chemo and Prednisone she was on during her treatments. The socket and ball of her joint needed to be repaired/replaced. The surgery took about 3 hours, and of course she is sore and working through recovery. She came home from the hospital the next day, and is now one week from surgery, and doing a little better everyday. She has the same condition in her hips, but at this point it has not caused any major problems. We are hoping this gives her some movement in shoulder soon and gets her out of the pain she has been struggling with for over a year now. The amazing thing about our move here was to get a bigger variety in medical care. The Houston medical center is like a small city with 20 high rise hospitals all on one street (Kind of life Las Vegas without all the lights and glitz). Jodie found a great surgeon at Baylor University so that was a huge blessing. That was a big part of the reason that we moved here, so that has proved to be a blessing. This is true with the many specialists that take care of Jodie's other complications and follow up treatments.
We are also currently in the middle of our first full summer here in Texas. It has actually been above 90 since late April, but you can understand why we love the sunshine and heat. Anchorage can have some beautiful days, but they are short lived and rare.
THe boys are busy with scouts playing with friends, and usually a daily dip in the pool. Funny thing about pools, our water temp is 90 degrees so it is not as cool and refreshing as it was in May. However, we love it and use it almost every day.
The girls are busy with gymnastics, pianno lessons, and plenty of drama (not the theater kind, the girl kind).
We love them all and enjoy each day with them.
My job is extreemly busy here but because much of it is outdoors I find it very appealing.
Thanks to all who continue to look after us. This May marked 5 years since Jodie's first diagnosis, proof that every cancer walk, donation to research, and prayers on behalf of us or others you know truly does make a difference.
Love Matt and Jodie and family.
Tuesday, April 8, 2008 9:01 AM CDT Hello to all our family and friends!
So much has happened since the last time I updated. I have had a very hard time getting even the desire to write a journal entry in the last five months. I was so "sick" for awhile that I physically could not do it, and then I just felt like I would be moaning and groaning about how horrible I felt. I stopped calling all my friends and family because I didn't think it would be very fun to talk to me when all I wanted to say was, "I can't take another minute of feeling this way!" Isn't that what I have been telling everyone for five years? I was just tired of everyone having to listen to complaining and I wanted so badly to have good news, and so I just stopped writing. On top of everything else, I became extremely depressed--for those of you who have been in that situation before, you know how much it makes you feel like you can do nothing, not even get out of bed.
Right before I left Alaska, I went to a doctor about my thyroid. He tested me and talked to me, and we realized that a lot of my fatigue and sleepiness was related to my thyroid and that I needed more synthetic thyroid hormone. He upped my dose, and for the next two or three months I could tell there were changes in my energy level. It takes six weeks for the changes to take effect, so by the end of August I was starting to really get excited about how I was feeling. That is when I tried to find a doctor here and was sorely disappointed at every turn, but was also trying to change medications and doses and trying to figure out what my "normal" feelings were in order to figure out which dose and medication were best.
By the middle of November things were not good. I was starting to feel horrible. I was very depressed. It was hard for me to even shower each day. One funny thing is that the depression caused me to dislike my house. I would tell Matt that it needed to be painted, that the walls were to white, that I hated the bugs, that I hated the dettached garage, that I couldn't see the mountains (there are no mountains in Texas), that it was too dark--I even took down almost every curtain in the house becasue there wasn't enough light--, and then, as though things weren't bad enough, a rat--a big, huge rat--died in under our garden tub in our Master bathroom!!!!! The stink was horrible, but luckily we were able to find it. I told Matt that I hated Texas and this house! At this time the pain was so severe in my shoulder, I finally found a surgeon, and he told me that I probably had avascular neucrosis in my hips and that if I didn't get off the pain medication I was on, that when he did a shoulder replacement, pain relief would be hard! I had already cut WAY down, so I just came home and in three days I was done with the pain medication!! (That was a wonderful thing, but I am sure it just added to the horribleness of the situation.) By the beginning of December I realized that my thyroid had gone from underactive to overactive. I was unable to sleep at night; I had terrible anxiety; I was horribly depressed; my heart raced; and I lost 30 pounds (Love that side effect! :)). I started on anti-depressants and lowered my Synthroid. For two weeks, I could do nothing but lay on the couch. I felt like I was going through chemo all over again! I was so tired, but I couldn't sleep. I couldn't even get up off the couch to clean the kitchen or do the laundry. I was so scared that this was how my life was going to be.
I shopped on-line for Christmas, but I was really stressed because I knew that I needed to get to the store at least once for all the small things and even though that sounds so easy, it was overwhelming to me. Well, once again, the Lord was mindful of me in a big way. Three days before Christmas I felt like a new person. I had so much energy and no pain. I couldn't believe it! I shopped for two days and was able to get ready for Christmas and Christmas Eve!! What a blessing! I know I have already used my miracle, but the Lord keeps giving them to me, and I am so humbled by it! Then, on Christmas Day, I was able to enjoy the kids, but a lot of the yuckiness came back and stayed through the end of January.
I had found a wonderful pediatric oncologist, Dr. Russell, and she was trying to take care of me, but I soon realized that she was not going to be able to deal with all my issues. She had referred me to an internist who specializes in Transitional Medicine, Dr. Suzawa. This is a fairly new department at the Baylor (College of Medicine) Clinic and I could not have found a more perfect fit for me. They actually have a clinic at the Chrildren's Hospital that sees adults who had cancer as children and helps them deal with all the issues that come from cancer treatment. There are so many! So in January, I set-up an appointment with her. I could not believe how thorough she was and how she ACTUALLY listened to me, and then at my second appointment, she remembered who I was! She is 5' tall and looks like she is only 21! I wanted to ask to see her medical license at first! :) But when she started talking, there was no doubt she knew her stuff.
To make a long story short, she has tweaked and changed and even stopped some of my medications and has referred me to many specialists. By the end of February, I was feeling the best I have since chemo. The last time I was in to see her I told her that my family believes in God and that when we left Alaska, we really didn't want to leave, but we knew that coming here was part of His plan for us and that there were reasons unknonwn to us at that time. I then shared with her I now know that one of those reasons was to meet her and that she has been an answer to my prayers. Another miracle for me. I have so much to pay forward!!
My friend, Carinne Gee, told me once that as we travel through this earthly life it is similar to a child sitting in a carseat in the back of a car. The child can't see the road or were they are going or how far it is to the destination, but the driver can. We are like the child in the carseat. We don't know everything about each decision we make or trial we have and where they will lead us, but we can know that when we make righteous decisions with faith and prayer, it is as though we are "strapped-in" and can trust and have faith that the Lord will be with us the entire way and will help us through all the hills and valleys that only He knows are coming and how they will make us feel. That brings me such great comfort. I have experienced it so many times in my life that I KNOW it is true. In December when I was so sick, the Lord must have felt like a parent with a screaming child and a long journey ahead, but even in the depths of despair through that, the peace and comfort that He brought to me in so many ways is overwhelming as I think of it now. I said to Matt a lot of times that I needed to be back in Alaska with the people who I loved and who loved me because the people in Texas were not aware of my situation, but I guess I needed to learn how the Lord can answer prayers even when there are not so many earthly angels around as there are in Alaska! I miss you all, Alaska Friends!
As Matt said in his last entry, since I have been feeling better, we have had the privelege of having a few visitors and experiencing some fun as a family, so I am grateful that I could feel good for these things.
I was trying really hard not to go on and on so that I won't feel like it takes too long to update the site, but I love to be able to share my testimony of the Love of God.
I did want to address one issue quickly--a few days ago someone left a message on the guestbook about a negative experience they had while staying with us. They didn't leave their name, so I wasn't sure how to address the situation, but after Matt and I talked we came to the conclusion that it could only be one family because we have never had anyone visit with us that didn't say they had a wonderful time. The family that we are referring to came to Alaska the last week of June last year, in the middle of our preparing our home for sale and when I was still very affected by my health problems. They ended up going to a hotel on the last night of a week-long vacation. I feel bad that they did not feel welcome in our home. We had done everything we could to welcome them and accomodate them at that time--there was three adults and two twin babies and we gave them our entire downstairs to use and my boys and girls all slept in the same room so they could have the two bedrooms and one bathroom to themselves; they had the use of our van for the entire week; Matt took a day off of work and the husband fishing for halibut and helped him in every way possible to land and bring in the fish and then we sent them home with all their fish and ours too; I helped to feed them and tried to keep my kids out of their way as they didn't like my children to touch their babies; and I tried to clean my house before they came and keep it clean the the best I could at that time, but after four years of health problems, the house was dirtier than I would have liked it to be. There was an issue with one of my kids that I was totally embarrassed about (and won't share it only for their sake), but it was resolved and I thought would have been understood as a normal "kid thing" by anybody. I only share this with you in an effort to make sure that people understand what they can expect when they come to our home.
We welcome everyone with open arms and will accomodate you in any way we can--always including a welcoming and warm place to stay; a half-way clean, driveable car to use; no-guarantee-homemade food to eat; and maybe even a ride on the boat (if it is working!:)), but we do have children and a family and a life and can't always make it like a hotel here. I do always try to clean before people come, and almost without exception have been complimented on the cleanliness of my house, but once again, there are no guarantees. :)
We have probably had over 100 people stay with us throughout the years of our marriage and have not had to deal with anyone saying they would never come to our house again, especially in such a public forum, but I guess it is like I say when people come to my house and it just happens to be clean. I say, "This is the illusion. Look at my kid's rooms and you will see the reality!" I don't like people to think that my house is always clean. Likewise, it is good for people to know that there is at least one family who did not have a good time at our house. Then if that has happened to you, you know it is normal, and you can judge for yourself if you want to visit. As always, you are all welcome!
Sorry for the drama. I hate drama, but I just felt like this issue needed to be addressed.
Thanks again for your friendships. I promise, PROMISE as long as I am feeling good I will update much more frequently.
Jodie
Monday, March 24, 2008 8:46 PM CDT I know it has been a long time since we have updated. I feel badly that we only seem to once in a while these days. We are doing our best to adjust to things here in Texas and all the things normal families without cancer deal with.
Jodie continues to do well here in Texas. The best part about moving for her has been the vast medical community to draw from here. As far as we know, she is still cancer free, and has been to see many specialsts in the area from different hospitals such as MD Anderson, Baylor, and Houston Children's. She even found a Dr. that has written several papers on Neuroblastoma, and another that specializes in "After Cancer Treatments." This has been very profound for Jodie because for a time, she was fighting to beat cancer and did not care about the side effects of treatments, she just hoped it stopped the cancer. The problem is that many of those drugs and treatments have caused damage that seems permanent.
However, we beleive that good can be found in all things and sittuations and moving here has really helped Jodie. Being out of the cold, and around more specialists have helped her deal with the many things left damaged in her body. She continues to have thyroid problems, numbness, pain, and now joint problems caused by Arterial Vascular Necrosis, due to high doses of Prednisone. She may need a shoulder replacement in the near future, but she is trying physical therapy in the short term.
We are so happy she is still with us, is happy, and except for some discomfort, she is doing well. We both often miss old friends in old places, we have found the people here in the Houston area to be wonderful and have made some new friends to ease the sadness of missing old ones. In fact, we just had a visit from the Gee's, our dear friends from Alaska. We have noticed that whenever we do this, it feels as though we have only been apart for a few days or weeks, rather than months or years. Great friends are just that way aren't they.
Jodie and I celebrated her birthday with a 7 day Carnival Cruise from Galveston to Cozumel Mexico, Grand Caymen Islands, and Montego Bay Jamaica. We had a wonderful time, and found it to be very relaxing. This is something Jodie had really looked forward to and so it was great that we could have Jodie's mom come and take care of the kids for a week why we snuck away. They are very affordable here (less than $400 per person) so if anyone ever wants to take one and stay with us the night before and after your cruise we would love to have you.
We still feel very blessed that we have been given this timee, and that so many of you helped us to be here and to get through the dark and scary times. To each of you, we send our love and appreciation, and wish you all the best in 2008. Love the Clarks in TX!
Monday, December 24, 2007 3:48 PM CST Merry Christmas from the Clarks in Texas. It still feels strange not to refer to us as Alaskan's anymore, but we are getting used to it. We took this family picture by our pool on Christmas Eve, with the sun shining in 75 degree weather, with our tropical banana and palm trees in the background, and thought of all of the white Christmases we enjoyed in Alaska. We have not forgotten where we came from, what we went through, or our friends and family along the way. We miss you all so much and think of you often as we look at old pictures or reflect on things we miss or enjoyed. You are not forgotten. Quite the contrary actually! Jodie and I just reflected on a journal entry from January 12th, 2004, (right before we left for Jodie’s Stem Cell transplant). We are so grateful for the privilege of enjoying another Christmas together.
Jodie’s health has improved, and except for some thyroid and shoulder problems is doing well. The kids love their school, we love our new home and the community. We are making friends and doing our best to fit in to Texas Culture. People are wonderful here in the South as we were told they would be. They do go BIG on Christmas lights here, and Jodie and I have decided it is because they need to CONVINCE themselves that it is winter and Christmas time, and since there has not been much of a fall or winter, they go big on Christmas lights to beautify the neighborhood. They do a great job of bringing in the spirit of Christmas.
We litteraly go from using the A/C one day because it is 80 outside, to using the heat the next day because it is between 40-50 degrees the next. Crazy! The kids and I decided no matter how cold it is, we will jump in our pool every holiday including Halloween, Thanksgiving, Christmas, New Years, Valentines Easter, and even the 4th of July. We plan to scream “Happy or Merry _________” whatever the occasion is before we jump in just because we love having a pool so much! Right now the water in the pools is 54 degrees but we will do it tomorrow no matter how cold it is (with the hot tub to warm us up afterwards).
Anyway, we wish you all a Merry Christmas, and pray this new year brings you joy and peace. Again, we have not forgotten you or what you all mean to us!
The Clarks in Texas!
Sunday, November 11, 2007 11:20 PM CST A lot has happened in the last two months. We have been getting used to our new house, new schools, new job, and new State. We are really enjoying everything.
Our house is amazing. It is a house the likes we never thought we would ever have. It is not extravagant or ostentatious, but it is roomy and fits our family well. Each child has their own room and Matt and I have a master suite kind of separate from the rest of the house. Along with a family room we have a "game" room in which the previous owner left us a pool table. It is kind of an extra t.v., rec room for the kids to have friends and hang out in. A funny story about the pool table is that the previous owner included it in his initial counter offer to us when we were purchasing the house. I didn't really want it because it takes up a lot of room and I have never been a fan of pool, but Matt was excited about it and thought it would be fun. I talked him out of it, and we removed the pool table from our next offer. Well, I think the other owner didn't want to have to get that big thing out of here (it is upstairs) because it was in the final offer! It turned out to be a good thing; all the kids (including Matt) have really been enjoying it. We also are really excited about our swimming pool. It is a small one, but we have all had a great time in it already. It has now gotten too cold lately to swim, but it has an attached spa that is fun for cool weather dipping. The kids miss swimming, but it will be time again before we know it. There is even a small pool room built out in the back-half of the third bay of our garage. It is nice for changing at the pool, and Matt keeps his weights out there. We have to be careful to keep the door closed or we find some four-legged friends working on their abs! There is so much nice space in our new house, but it still is not quite home. I really love it, but rooms still need to be put together with pictures hung before it will feel totally homey. My kitchen has so many drawers and cupboards, I can't remember were I put things from time to time so they are always in a different place! It will only be a short while before this will be our "homey" home. Today Hayden said, "Oh, I can't remember what our house in Anchorage looked like. Just a minute; just a minute; Oh, yeah!" I am starting to feel the same, but I know that Alaska is in my blood. It is in all of our blood, and it will always be home.
Katie and Emmy really like their new school. They are the Gilmore Gators. That is a big deal here. The kids have a Gilmore Gator pledge and a Gilmore Gator song. Texas likes their mascots. The girls are doing well academically. Emmy struggles a little with some homework, and we have to work a little harder than in Alaska, but it is good. Katie has been waiting for homework since the beginning of the year. Last week, she made me make up spelling words for her--Emmy and I practice spelling every day--and now, FINALLY, she has real homework. I wonder how long it will be fun. The boys are also doing well academically. I am also impressed with their school and their teachers. This year, Tanner is learning Spanish, and Hayden is learning girls. We don't encourage calling girls or visiting girls at his age, but they do flutter their eyes quite a bit when he is around. It is just weird when you realize that someone has a crush on your child. How could any girl like a teenage boy? They are so gross! :) The biggest adjustment school-wise is the length of time it takes to drop off and pick up the girls from school. Luckily now that we are in our house, we rarely have to do that. There are over 1,000 kids in their elementary school, so in the beginning of school when we were in the hotel, it could take 45 minutes, waiting in a line of cars, to pick them up after school. Now it is more like 20 to 30 minutes. There is this huge line of cars and a lady calling out the children's names as the parents drive up. You meet your child in the designated spot which the lady has announced. There are helpers to open your door to let the kids in, so don't think about getting out of your car or needing for them to get in on the driver's side. There can be none of that! It is a well-oiled machine and you don't want to be the one that breaks it down! Luckily now that we are in our house, we rarely have to pick up.
Matt is really happy with his job. The people that he works with are great. They are the typical people we have found down here. Good Southern folk. He thinks he is really going to enjoy the work they do. He has been able to get out on the water more lately and is anxiously anticipating more of those opportunities.
The weather has been very mild the last month. It is funny to see people in sweaters because it is 65 degrees outside. (I will have to say that I was a little chilly myself!) We have enjoyed the heat since we moved here, and I think we are one of a very few that are sad to see it go! Too bad the critters don't seem to change with the weather. I don't know when or if I will ever get used to them. Spiders are everywhere along with various other kinds of bugs. Chameleons roam free along with frogs and snakes. (A frog was hoping across the family room floor last night! I always wonder how many I don't see!) Ants...I never thought I would care much about ants, but they are becoming unbearable. Poor Matt has been bitten by the fire ants more times than anyone should have too. He never lets the bites slow him down, but I know they are painful. Today, we found them invading our master bathroom. Needless to say, the exterminator is coming tomorrow!
It is late, and I have got to limit my time for these entries. I need to sign off now, but I hope to update you more before Thanksgiving on all my doctor visits. I have found a wonderful doctor (FINALLY) and am feeling the best I have since I started chemo in 2005! Please know that we think of you all often and will be forever grateful for your friendships, love, and prayers that have gotten our family to be where we are today.
Jodie
Thursday, October 18, 2007 3:09 PM CDT Hi everyone, Jodie has not updated this for a while, so I thought I would do a quick update. We have been in the Houston/Galveston area since August 1, and have really enjoyed the move and the new area. Yes....it is very hot here, but we love it and have adjusted well.
We moved into our house on October 1, so we are still unpacking things, and decorating rooms (Jodie is anyway).
Jodie's health continues to be a source of inspiration for us, she is doing much the same. She remains very busy. She still has her numbness and pain and a bit of fatigue but overall doing great.
I promise we will add some new pictures some day soon, and perhaps even get a long update from Jodie herself.
Thanks for continuing to check on us and for your love and prayers.
Sunday, August 26, 2007 10:37 PM CDT Tomorrow is the first day of school for the kids. They are all anxious and excited. As we were picking out the "first day of school" outfit and getting backpacks ready and lunches planned, Emmy found a moment when it was just her and I in the bedroom together. She said, "Mom, I think that the kids in Texas already learned what the fourth grade kids in Alaska are going to learn this year." And then her chin started to quiver and tears came to her eyes. I had to give her a hug and assure her that even if they had learned other things last year, they had all forgotten everything this summer. :) I reminded her how nice and kind her teacher was and how excited she was to have Emmy in her class. I just want to go with her tomorrow and hold her hand and tell everyone that they better be nice to her and not break her precious little heart. I am scared for all four of them tomorrow. They are all so excited, I just hope they still are when they get home tomorrow!
The boys are going to an Intermediate School which is 6th, 7th and 8th grades. I am glad they will be together again. They are both going to be taking AP classes, so we will see how everything goes. It has really surprised me how different everything here is from the schools in Alaska. The girl's school is the same way...very different. I am excited to have a new experience with the girls in a new school and meet new moms. I am just soooo glad I finally got them all registered and ready to go!!
This week seemed to slow down a bit, but we still haven't gone anywhere fun since we moved here! We have had so many dinner invites that we have been busy and having fun but not at any local attractions. I am glad we live here and that we are not just visiting.
Everyone keeps telling us that August and September are the "worst" months. It reminds me of when people would move to Alaska in January. We would say, "January and February are the "worst" months. It is really hot, but it cools down in the evening, and it makes swimming great. Thank goodness for air conditioning!
We'll keep you informed and let you know if it ever does cool off here!
Jodie
Sunday, August 19, 2007 9:54 PM CDT Can you all believe that I am actually publishing another journal entry so quickly? Being far away from anyone with close ties, has once again made me appreciate the opportunity to keep in touch with so many with one letter. I wish I had time to write each of you a note or a reply, but it would be so hard to find the time to do that. I promise you that we think of you ALL often and are grateful for ALL our relationships and what we have learned and shared with each of you. Even those of you who I have never met...I am grateful for the words of strength and encouragement that you have left for me, and I think of you each time I realize that there is not one person to fill you in on our family's latest doings, and so I better get something on the website! :)
The last week has been filled with much stress and a few tears. I have worried about getting the kids registered for school. The Clear Creek Independent School District (You know how they say everything in Texas is big; I am not sure about everything yet, but I can tell you for sure that street names and business names are HUGE! Our street name is going to be Biscayne Bend Lane - Our Subdivision is going to be Villages of Oak Creek Colony. Why??) requires a SSN card for each child along with a birth certificate, shot records, the child's last report card, and TWO pieces of mail that have your address on them. They must have thought that I was this well-prepared person and that I would call the school district before we packed up our files so that I would be sure to have the correct information to enroll the kids in school. I can't imagine what they were thinking! I know I was thinking it would be easy. Also, since we are living in a hotel that is not in the boundaries of the schools the kids will be attending and it will be more than a month from the beginning of school before we move in to the house we are buying, I have had to jump through a bunch of hoops to get them registered. It has been a little frustrating, but I understand that rules are necessary. I might not understand those rules so well if they tell me that I have to register them elsewhere for one month until we are able to move in to our house! I guess I shouldn't worry about that until I figure out if they can even attend school here...oh my.
I had a really bad experience with a doctor this week also. It really was my fault again. As you will realize by the end of this entry, I am not good at being prepared. I am more of a fly-by-the-seat-of-my-pants and everything-will-work-out-fine kinda gal. So I set up an appointment to see a doctor. I want to see a Dr. of Internal Medicine, and I had tried to find someone that a. was covered under insurance b. came with good credentials and schooling c. had an office that was near to our new house and, after doing that research, d. someone that I felt really good about. Well, I was really anxious, but I did something REALLY stupid--I didn't have any of my previous medical records with me at my first appointment. Now I know that sounds so stupid, but I have really thought about it a lot and have realized that I have been to many, MANY doctors over the last four years, and when I arrive, I go in and they take care of me and never question what I say BECAUSE they have received the records from my oncologist's office because they were either sent by my dr's office because they referred me or because Matt made 25 phone calls to get them there. Well, when I was in the waiting room, all of a sudden I realized that I had not signed any releases for medical records to be given to this clinic, so how could they be there?! I panicked and called my oncologist's office in Anchorage and asked them to please fax the most recent notes to the clinic where I was going to be seen. I thought that we had clarified everything and that it would be done in the next 1/2 hour. So I relaxed and they called me back and checked me in. When the doctor came in, I thought she was nice, but kind of guarded. Being my airhead self, I was just talking and excited to get to know her and to find someone to care for me and help me through this transition. But I forgot that I was in the Houston-area at a doctor's office asking for narcotic pain medicine (which, by the way, I have cut the dose IN HALF since January!!! WAAHOOO!!! I see a light at the end of the tunnel for final being done with them!) and saying that I just moved here. Then I said to her, "Did you not get the fax?" She asked me what fax and I said that it should be on the fax by now and she should see if she could find it. She came back and there was no fax. Then everything just went downhill. She kept asking what this was for and what that was for. I realized that everything I said just sounded stupid and she was not believing anything. Anyway, I finally said, "I know that you don't know me, but I really did not expect to be treated like this. I forgot that I have been dealing with Oncologists and their Nurse Practitioners and they are so loving and so caring. I forgot that this is the real world. I don't think this is going to work. I think I will need to find a different doctor." But, of course, I couldn't just talk in a nice even tone. No, I had to be crying and sobbing how I do when I get upset. I still don't know whatever happened to the fax that was supposed to come. It was an unbelievably awful experience. I left that doctor's office feeling embarrassed and angry because I have to take so many stupid medications. I just felt like saying to that doctor, "Do you think I want to be in this doctor's office? I hate that I have to come in here every month and waste a whole afternoon waiting in the waiting room and the exam room and then, when I go home, I have to deal with pain and numbness and lethargy and so much more." The list goes on and on. If I had just had the records there, it would have been a totally different appointment. It was my fault, but it was good to open my eyes to the fact that, just like the school records, I need to be better prepared.
Something good did come out of that doctor's office visit. I had told Matt that I really didn't want to tell all the new people that we are meeting about what we have gone through. I just want to be "normal." My energy level has increased dramatically because of a drug that I have been taking for the last few months. That drug has given me the energy to get through this move and excercise and become more of a part of everyday events in our family. This has led to me naturally having more energy too. It is another miracle for me. I am grateful every day for the ability to live my life. It seems so simple, but it is HUGE to me. Anyway, I just wanted to blend in and sit in the background a bit...just for awhile. Well, when I was checking out at the doctor's office, I noticed that the women's group leader from my church was in the waiting room, so when I was done checking out she came over to say "hi." Ever since I met Beth, I have felt like I have known her forever. She is just that kind of woman. She is one of the reasons that we have loved our church here. After we had talked for a minute, she asked me if my eyes were hurting because they were red. Kind of a sneaky, huh? :) I truly forgot that I had only known her a few days. I told her that no, my eyes were not hurting but I had been crying because the doctor had not understood about everything I had been through and that I was not trying to elicit unnecessary medication. After I said that, she looked at me and said, "What do you mean "all that you have gone through?" I threw my hand over my mouth and told her that I wasn't supposed to tell anyone and I had really screwed up! Then she was really confused. I finally told her a brief synopsis of what I had been through and asked her to please keep that part of my life private. Then she had to run to her son's doctor appointment, and I had to get back to the kid's at the apartment. As I walked out across the parking lot, I felt overwhelmingly alone. I felt like I didn't have anyone here who loved me and understood what I was going through and what was I going to do about finding a doctor, and, on top of that, I had just spilled the cancerous beans. When I got in the car, I just sobbed and sobbed. But, then I started to realize that there is a responsibility that I have as the receipient of so many wonderful blessings and miracles, big and small. As I dried my eyes, I knew that this had all happened for a reason. I knew that I have a responsibility to share my testimony that God loves each of us indiviually, that the deepest sorrows in our lives are what make it possible for us to feel the most unbelieveable joy and love, that we can have faith everyday that when God speaks and we obey, we will always be right, and with that same faith, we KNOW that we would not want "our plan" for our lives, but God's. I would be an ungrateful servant if I chose to stuff all those wonderful spiritual experiences in the back of a closet hidden from everyone. And, on top of all that, I certainly don't want my children to see me "hiding" anything, especially not the blessings the Lord has given our family. I needed to realize that it is better that I get labeled as "The Cancer Lady" than that, even just one, person doesn't have the opportunity to learn from the experiences that God has given the Clark family. And in the end, I want to stay around for as long as I can, so I better make myself useful! Which reminds me; I already received a "job" at church. I am the Education Counselor in our women's group. It was very weird to sit at the front of a room full of women that I am supposed to love and know what they are in need of when I don't even know their names! I trust that the Lord will help me get to know them quickly.
I couldn't imagine how there could be any people as welcoming and loving as the people in Alaska, but I will have to say that these Texans are given ya'll wonderful Alaskans a run for your money! We have felt welcomed by Matt's office co-workers and families; by our new neighbors-to-be; by the people in our new Ward (church); and just by Texans in general. I am so grateful for that; it is just nice to talk to people. Especially at those times when I do feel so lonely.
The kids are still happy and loving swimming in the pool. They are excited about school. Texas has one weekend in August without state sales tax, so it is a huge shopping weekend when most families buy their school supplies and school clothes. I was out for a few hours on Friday morning picking up the generic school supply items for all four of the kids. I saw more than a few funny looks at my overflowing cart at WalMart. I left a few things for everyone else. I also did not buy a few of the notebooks so the kids can pick them out and get the fun ones that they want. I still have a few things to do and I gotta get it done because next Monday is when school starts for us.
Early this week I had stopped at the Goodwill (I buy most of the kids and my clothes at second-hand shops. It takes a long time to find the good stuff, but since I am home w/o kids during the day during school I have the time and it saves us a lot of money.) At second-hand stores, you can only return items for store credit or exchange, so I really try hard to make sure everything is in really good condition and that it is going to fit. On Wednesday, I spent around $100 at the Goodwill and felt pretty good about our school clothes shopping being done. Well, later that night I was talking to one of the wives of Matt's co-worker, and she asked me if I knew if the kids schools had uniforms. Needless to say, I was stunned. I had read lots about the dress code, but in my quick reading, I had not gotten that info! It turns out that Emmy and Katie don't have school uniforms, but Tanner and Hayden do. They will were Khakis and Polo Shirts. Their pants can be black, blue, or khaki; the shirts can be black, grey, white, light blue, royal blue, navy blue, marroon or fire-engine red. We had to start pretty much from scratch. They boys each have two or three pairs of dockers that they wear to church, but other than that...It is kind of nice to just go to the store and get one color of each polo shirt and pants. I also like that there might be less worrying about clothing in junior high--that could never be a bad thing.
It has continued to be a fun transition, and we are so anxious to be able to move into our new house. Our old house still has not sold, but I think Matt and I have given up on trying to change anything about the house to try to sell it. There are so many things we are trying to get done here that selling the house has kind of fallen to the back burner. Having said that, we have not given up on it selling in the next month.
Thank you for your guestbook entries. It makes me feel better when I see that some of you who we were not able to see before we left and friends far away now know where we are! I hope that if any of you are in Houston for work, play, or visiting family, you are able to make contact with us and we can at least go to dinner! We are so grateful for this website and the opportunity it gives us to stay in touch with so many! What a wonderful blessing!
Tune in next week for another episode of "As the Clark's World Turns!" Talk to you soon!!
Jodie
Saturday, August 11, 2007 6:52 PM CDT Howdy Ya'll from the sunny state of Texas!!
We are all alive and well and a little bit sunkissed. For those of you who don't know...about the third week of June we found out, after much contemplation, prayer, and waiting, that Matt was going to be transferred to Galveston, Texas! This did not happen suddenly. After our good news in January about my health, we were able to think about life a lot differently. We initially were not thinking to leave Alaska. We LOVE Alaska for many reasons--the beauty of the landscape; the beauty of the extreme seasons, the beauty of the animals, and most of all, the beauty of the people. We started out just wanting to add an extra bathroom to the upstairs for Emmy and Katie to use, but nothing seemed to work out and it seemed like another option might be to start looking to move to other towns in Alaska. We just really couldn't find anything we could afford that would be close enough of a commute for Matt. I guess the next logical step would be out-of-state. I told many people that the Lord knew I would REALLY need to know that it was time for our family to leave Alaska, and so He made it very clear and easy for me. More than a few times I would have a question about how a move would affect my children or our friends and family or my health, and each time within a day or two the answer would be made so clear to me. It was really almost unbelievable the number of times that that happened...and so when the time came that Matt said to me, "How 'bout Galveston, Texas?" The answer was easy for me. I know that the people we love in Alaska did not have that kind of preparation, and so it came as quite a shock to many. It was the hardest move we have ever made because of the love and bond we had made with so many wonderful people. But it was also the easiest move we have ever made because of the surety that this is where we are meant to be right now. I said to Matt so many times, "why are we leaving this place that we love so much and these people who have stood beside us through so much and who we love so dearly?" But, as I said before, the Lord had made it so clear to us that this was the next step in our lives. As I said goodbye to those who we were able to see before we left, I knew that the bonds of love we had developed with so many will last forever and those relationships will be highly treasured by us as some of our most precious possessions and they will last forever.
In mid-June, we found out that Matt's transfer had gone through, that we were really moving, and we could begin selling our house and making plans for a move to Galveston. We worked almost 18 hours a day for the next three weeks to get our house ready to sell.
Matt and the boys were down in Seattle for two weeks fixing the boat (more about that later :)) up when we found out that we were moving. It was very stressful to try to get as much done on our house as I could before he got home, knowing that we would want to get to Galveston as soon as was possible to buy a house and get the kids ready for and in to school. On top of everything else, I had some people, who had planned a vacation months before, come and stay at our house for a week's vacation, right before Matt got home until a few days before we put the house on the market. I think that had to be one of the most stressful weeks I have ever had to endure. If our marriage and children survived that, I know we can survive anything! After our company returned home and we finished up everything necessary to put the house on the market, the stress returned to a more...manageable?? level. Even when the house was on the market, we worked for another week getting things done that we thought would help sell the house. (It's still for sale, so apparently those things didn't help and weren't even necessay.) We are hoping that the house sells before the Government has to buy it from us, although it is a great blessing and we are very grateful that we know for sure that, if our house doesn't sell in 90 days (that will be October 8th), we won't have to think or worry about it again because the Government will buy it from us.
After we finally were done with most of our house "stuff", we were still sooo busy getting ready for the move. There was rarely a spare moment for anything. Matt actually had a paintbrush in his hand as he walked out of the house to catch our plane! We were running around crazily throwing odds and ends in a box, taping it up, and asking our neighbor to mail it to us. I had run to Kim's, my sister's, house a few hours before our flight to say goodbye. Over the few weeks before we left, I had only had a few minutes with her and wanted to spend another few minutes. Of course, I stayed too long, and when I arrived back home, Matt was stressed out because I had left him by himself to put the finishing touches on our empty house. Then, on top of that, we were late for the airport. A lot of our wonderful, dear neighbors were there helping Matt madly finish up everything in the house and then they drove us to the airport.
The week before we left was an intensely emotional week for me as we tried to finish up odds and ends and said goodbye to those who came to wish us well on our journey. Once again I found myself asking, "why am I leaving all these people whom I love so much!?" But I was always answered with a calm, peaceful feeling and a knowledge that we were taking the next step in our lives...even the feeling that our lives and choices had brought us to this next step and this next step was something that was very important to our family and that we would never regret moving to Texas. Our family is so excited to be starting a new adventure and to see what the Lord has in store for us. I think it is something that our family really needed.
**One p.s. on this story is that I want all my Alaska friends to know that I was not able to say goodbye to everyone. We were so flooded with things to do from the minute we found out that we were moving until the minute we left for the airport. Please, please, please don't be angry or sad because we were not able to see you before we left. I promise we will be back for visits and we love you!***
Matt and the boys had quite the adventure fixing up the boat while in Seattle. It is an old (in boat years!) old cabin cruiser that he got for a very good deal on Craig's List. They brought it back to life and we are waiting anxiously for the day that we get to put it in Glaveston Bay and try 'er out!
BUT the adventure continued on our trip to Texas. After we flew to Seattle to pick up our new-but-old Suburban and our new-but-old boat, we had planned just to drive from Seattle to Texas with a few detours along the way. We were excited for kind of a family vacation. My father's family had made plans for a BBQ and I was excited that we would be able to attend and see many of my extended relatives. My mother has a new home that we were excited to see; my kids don't remember Grandma and Grandpa Clark's house and were so excited to visit them; Matt's brother's family was planning to be at Grandma and Grandpa's house while we were there; my sister is having a house built that I was really excited to see; we were also excited to see a few "old" Alaska friends along our way, and we were just plain excited to see everyone and enjoy a vacation as we journeyed to Texas. Well everything didn't go as planned. Here it is in Matt's words:
"Hi guys, just thought I would drop you all a note to let you know we made it here to Texas. I would have said made it here OK but that was not really the case. But we did make it here and we are happy we are here! Here is how our adventure started. We flew to Seattle from midnight to 6:00AM, got breakfast at Denny's, picked up our rental car, and then tried to drive to friends house, but got too sleepy. So we pulled into a walmart parking lot under a shade tree and took a hour and a half nap. We had a great time at the Benettis (friend's from Washington), the kids swam in the lake, and we got the boat and vehicle ready to go. The night before we were getting ready to leave, we noticed the keys to the van were missing. We looked everywhere and decided the only place they could be was inside the van itself because the girls had been playing in it earlier that day. So we called a locksmith at 11:30PM and he came and opened up the van. Turns out the keys were not inside, but at least the doors were open now. Later the next morning we found the keys in the middle of a giant grass front yard. Noone knows whether it was the boys; the girls; or the dog.
Well the next day we got a very late start and drove until midnight to Pendleton, Oregon. The next morning after shopping for a bunch of stuff at Walmart we headed toward Boise, ID with the 12,000 lb. LA JOLLA (the boat) in tow. It was 104 degrees when we were climbing a couple of steep passes, and our new/used suburban decided it was a little too much to handle. I began to notice the temperature climbing, and the oil pressure dropping, and then heard the dreaded noise. A nice state trooper stopped and called us a tow truck and a cab which got us to the small town of Ontario,Oregon. (This is Jodie talking...This scenario was all a little scary to me. Matt was outside of the passenger door talking to me in the passenger seat. I turned to talk to one of the kids in the back, and there was the State Trooper's face right in the driver's window. Haven't there been many horror movies that started out this way? I didn't know if I would ever see my husband again as the four children and I climbed in to the cab that was a 1950's sedan that fit five people because it had to metal stools bolted to the floor where two of the kids sat. (Keep in mind that the State Trooper called this cab???) The driver was a gruff older woman and she had a passanger in the front seat that was about twenty years older and I think the passenger was the owner because she was calling the shots. Both looked like they had hard lives and I just hoped that, as we pulled away from our broken down truck, my husband would see me again!!)
"The next day (by the way, we did survive after they kidnapped Matt. I tracked him down, shot the bad guy and all his bad friends, blew up the lock that was holding him captive, and was back home the next morning to go to breakfast with the kids. It was just like th movies!) the local Chevy dealership (they were the good guys even though they gave us bad news)gave us the bad news. Our $7500 suburban was in need of a new $7000 new engine. Not good Still not sure what we are going to do about it. So we arranged a tow of the LA JOLLA to Texas, and decided to jump on a plane and just get here to Texas. Our friend Eric Olsen got us a rental car and so sadly we missed our trip across the country stopping to visit family and friends. We made it here on Weds the 1st of August, and have been adjusting to the heat. It about knocked us over when we came outside of the airport. But we are adjusting fast. Funny thing, people sweat here just as much as we do, they are just used to it I guess. I have told a few people the weather feels a lot like we are in Hawaii, the only difference is the oil refineries, but lots of palm trees and bananna plants. We have been getting lost a lot so we got a GPS for the car that tells us how to get places. We call her Naggy Maggy Magelan because she says things sternly.
The guys at work have been great, and have kids the same ages as ours, so we have really enjoyed getting to know them. I think it is going to be a lot of fun.
Today we really missed our friends. I also miss the beauty of Alaska. Unless people have been there, they just don't understand. We are the only people that talk funny around here, everyone else talks the same if you know what I mean."
It has been interesting to realize that Cold to Alaska is like Heat to Texas. Down here it would be great to have remote starts to get the air conditioning going so you don't have to get into an oven. Today we talked to some people in the neighborhood that we are buying our house. They said that the kids kind of stay inside until October when things start cooling off. Schools have days that they keep the kids in because they are to hot. If you get a really good parking spot, you can make it from the car to the air conditioned/heated store in any weather. The kids will go out to play and say, "It's to hot/cold outside." The only activity that is fun in the cold--Sledding. The only activity that is fun in the heat-- Swimming! Maybe Texas and Alaska are more closely related than everyone wants to admit!
We are buying a house in League City. It is in a great school district and neighborhood. Matt is a little sad that it is about 15 to 20 minutes from the water. We had found a house that we liked that was in a subdivision that had a boat ramp! But he gave in after a little coercing, and anyway, that means we will be 20 minutes away from a hurricane! We both love the house and are so excited to get in it and wish we could right now. We will have to wait until our house sells (which, like I talked about above, is not going so well) or the government buys it from us. The market is not so good right now--which helped us in our purchase but has not been so good for our sell. The kids start school on August 27th. Both the intermediate and high schools are right down the street from our house. The elementary school is longer if you walk, but close as-the-crow-flies.
We have a GREAT Ward (church congregation) and have felt welcomed and already loved by these good people. But even with all that welcoming and love, I have shed many tears in Sacrament Meeting missing our friends from church and all those who have loved us in Anchorage. I try so hard not to let them fall, but sometimes they do and then I can't hold them back anymore. I know everyone must think I am a terribly unstable individual...and I guess they would be right--just ask my husband! I really should just let them fall. This morning we were getting ready for church and looked at the clock to see the time. It was 11:50. I said to the girl's that in Anchorage we would just be leaving for church (well the rest of the family; I still would be home ironing my dress or finishing with my hairspray ritual!) Then we talked for a minute about how we miss everyone and how sad it is that we could not be in our ward. I went about with whatever I was doing, and then a few minutes later, I heard them counting down to 12 Noon and then they said something like, "And know the Klatt Ward begins."
All is going well here, and now I feel things winding down a bit. I promise that with this new adventure I will keep up much better on the website so everyone can see how things are going. I still need to find about 32 doctors! Not really, but about seven. That is my major task for tomorrow. Oh, wait! I see that tomorrow has now become today and I have gone on waaaaay to long. I will update again soon!
Jodie
Wednesday, May 16, 2007 12:14 AM CDT Hello to all of you who still check our site. I must apologize for us not updating this for so long. We have not forgotten the trials of cancer, and the many people who helped us through our journey. We have spent the last few months learning to live with all that we have learned, and what that means from here. In the meantime we have been very busy at home, at school with the kids, and even a little bit at play.
Jodie continues to do well, although much of what she now experiences are continued health difficulties as a result of her cancer and treatments. Much like Mike Miller, their bodies will probably always have some symptoms of what they went through. Jodie continues to have pretty constant pain and energy loss, and residual numbness from the damage to her spinal cord. Yet she can walk, and can still do so many things, and is no longer faced with the eminent prognosis she once had. She currently is sick with a cold, and what is only a day or two inconvenience for you and I, seems to hit her like a ton of bricks. It takes her days and days to recover, and she often needs antibiotics to get her moving again. I think much of that is due to the bone marrow transplant and the weakened immune system. She continues to benefit from the appropriate medicines that keep her moving. In summary, she can go shopping, get the kids ready for school, go out with her friends for lunch, do the housework, etc. Her biggest difficulty is that she can really only do one of those during the day instead of all of them like she used to.
Our kids will be out of school soon, and the long awaited warmer weather and summer fun will soon be here. We wipe the cobwebs off the bikes and scooters because the winter is finally over. We sold our little 20’ aluminum fishing boat and bought a large 28’ Bayliner cabin cruiser (which is like a motor home boat) for about the same price called the LA JOLLA in Seattle. We plan to go fishing and sightseeing and will have the ability to sleep overnight on occasionally this summer. The boys and I have to go and drive it up from Seattle in early June.
We thank you all for your continued love and support. We will forever be grateful that we have Jodie with us still. Sadly many we know of including a woman that was a family friend on my side of the family have been diagnosed and have passed on during the time Jodie was diagnosed. To them and their families we send our love, and tell you that we have not forgotten the trials they have gone through, and probably continue to struggle with. In our prayers we try and remember all that you have done to help our family. Jodie wants to do an update again soon, but please understand she has much she is forced to leave un-done during the day. You are all very close to her heart, and she marvels at the love you have for her and her family.
Enjoy your summer everyone! We will try and post a few pictures of our family soon. Congrats to the Miller’s on their new twins!
Sunday, January 28, 2007 9:49 PM CST I have waited so long already that I know I cannot wait a minute longer to share my amazing news! Over the last few months I have had a few different pains on my right side and so the doctors and I decided that an MRI and CT Scan would be a good idea. Even though I hate the ups and downs of scans, I thought it would be good to see if there was any new cancer or anything that we needed to deal with besides my spinal tumor. I set up and cancelled one appointment because it was too close to Christmas, and I didn’t want any bad news at Christmas. It was giving me scary thoughts, so I postponed until December 29th. Sometime after the scan--as we road the waves of "will it be good" or "will it be bad"--I was talking to my sister-in-law, Kim, and she said, “Wouldn’t it be so great if everything was just gone?” and I replied that I still had my numbness and pain, so I didn't know how there could be such a miracle. My mind could not even conceive a way that such a miraculous healing would take place; although I believed with all my heart that it could.
Well, three weeks later (earlier this week) we met with our doctor and she informed us that the place on my spine that used to be enlarged with “tumor” was now atrophied because of radiation damage and no longer exhibited any signs of cancer!!! There were four spots/places on my vertebrial bones that were new-—two were thought to definitely be radiation damage and two were inconclusive (thought to be radiation but could not rule out cancer). The spots in my vertebrae that had previously been seen on earlier scans, had not grown at all in 2 years. This was all a lot to take in, but when Dr. Anderson referred to me as cancer-free, I understood. This was THE MIRACLE. No more cancer in my spinal cord!!!!! Even if there are a few small spots that “could” be cancer—WHO CARES!!!! I will not be paralyzed next week; I will not die before Emmy’s birthday; I will see Hayden turn twelve and go to Junior High; I will see Katie go into 1st grade; I will see Tanner start to look at girls with a little attraction :)(Don’t tell him that or he would die!!).
I WILL LIVE TO RAISE MY CHILDREN!!!!
This miracle has been brought to me by your faith, hope, love, and prayers; and of any gift that I could give to all of you who have been so faithful in your prayers and encouragement, this would be it! I have prayed so many times that each of you faithful friends and family would be rewarded for your faith, love, and concern; hoping that the miracle would be something that would be so unquestionable that everyone would KNOW there had actually been a miracle. I knew that, if it was God’s will, the kind of faith that I felt from so many is the kind of faith that can move mountains!! Well, it did!! My cancer, for all intents and purposes, is gone! I am humbled to have experienced a miracle and grateful--so very grateful--to have witnessed faith so strong that it wrought this miracle.
I have looked back many times over the last few days to two years ago and the awful hell that I went through when the “tumor” was found in my spine and we traveled from doctor to doctor and saw the sadness in their eyes as they told us it was a tumor and there wasn’t much we could do. And then, five months later, when I lay in my hospital bed on oxygen, while a lung infection continued to make me more and more sick, the doctors came in told Matt and I that we would need to decide if I wanted to be put on a breathing machine or just die.
Even though those times were more horrible than anything I ever imagined I would have to go through in my life, I would never have had it any other way. During those days of struggling and awfulness when some gave up hope and made plans for my death, the sorrow of those days has only made the magnificence of this miracle even more profound. I learned so much about myself and those close to me. Because of that, I can know joy just as deep as that sorrow. I have cried and cried, great sobs of joy and happiness that my children will have a mother and that they have been priveleged to witness such a miracle as this.
This does not mean that my cancer is gone forever--although it is at least a possibility. I am going to have a PET Scan sometime in the next month; that scan will show if there are any active cells in my body that are too small for the MRI and CT to detect, and I will continued to be monitored, probably every six months. Even if someday we do find that it has returned, hopefully it would be in a place that is more operable and/or available for radiation. In essence, there is SO MUCH hope for the future with regard to my cancer. My numbness and pain will remain with me forever due to the radiation damage. My lack of energy and decreased immune system are a direct result of my Bone Marrow Transplant; so all those things I will have to learn to live with. We never delved very far into any kind of treatments, procedures or options to help me live with any of these chronic conditions--thinking they were related to existing cancer and why waste precious time running around to more doctor appoinments, a “Let’s just get you through” kind of attitude. Now that I can see that I have a long time to live :) (I love to say that!!), the doctor’s office and I will start looking at what options are available to me. It is very hard for me to think of living my life with chronic pain and a lack of energy. It is unbelievabley hard to be so tired that I cannot accomplish daily chores around the house, but I have no problem with learning to live that way. I get to be here to see my children grow!!! I am grateful to have that gift given back to me, and I will take it however it comes wrapped.
There will be some who may choose to excuse this as a medical mistake…there will be some who will look at the two small spots and focus on them and say the cancer is not “gone”…I choose to see the miraculous healing that has taken place in my body and also in my heart as I have traveled this bumpy, treacherous road. Thanks be to a loving, caring Heavenly Father who loves me and each of you without end and to Jesus Christ, His Son, who carried me through many unbearable moments. I cannot number the times that He gave me the peace to get through one more minute. I know that He will do the same for each of us in whatever our trials might be.
"Be strong and of good courage, fear not, nor be afraid...; for the Lord thy God, he it is that doth go with thee; he will not fail thee, nor forsake thee..." Deut. 31:6
I hope that one day, even if it may be a long time from now, I will be able to thank each and every one of you in person. May God’s choicest blessings be upon you and your family!
Jodie
Sunday, January 7, 2007 7:23 PM CST Hello everyone,
Jodie has been meaning for sometime to update this because she wanted to wish everyone a Merry Christmas and a Happy New Year. She also wanted to personally thank everyone that continues to check on her and for your prayers in her behalf. I think she has so much she wants to say that she knows it will take her “3 hours” (her words) and whenever she sits down to write she is either too tired or off to do something else. Please understand that sometimes she gets very overwhelmed by things she wants to do vs. things she has the energy to do. You all would be amazed at the things she does do. They are too numerous to list.
The good news is no news is good news. We had a wonderful holiday season with the kids, and tomorrow they all head back to school (which I know will bring Jodie a slight sigh of relief). We have also had the pleasure of having Susan and Jerry (Jodie’s sister and family) stay with us for the last week while they make their trek up to Galena to start their new job/life.
I know many of you are probably worried about Jodie’s medical condition. It has been pretty constant. Although she still has cancer that is progressing, it does so with only a slight increase in pain and discomfort. We continue to make minor adjustments to Jodie’s pain medication which allows her to continue to live life as full as possible. Like much of last year, she has about enough strength and energy to do one big thing a day (usually for 6-8 hours from 9-5) and then needs some rest in the afternoons and evening, and then gets a second wind about 8-11PM. What a blessing it has been to have enjoyed this time as a family. We were really quite uncertain what to expect a year ago, but have had faith, and have done all we could medically and hoped for the best. She has remarked many times how we have known people who have been diagnosed and have sadly passed away in the time since her original diagnosis in May of 2003. We know that a big reason for this is the type of cancer she has is stubborn but grows slowly. Other people have more aggressive types that just spread like fire. There are some things we as humans have little control over, but we all have faith and hope to endure the trials we are given.
There have been many people who have made our Christmas special during the last few years. We enjoyed hanging ornaments from SBS, from 2004, and quilts made for the kids by friends of Jodie in 2005, and looking through old Christmas cards and letters. This year someone blessed our family with the 12 days of Christmas which our family looked forward to each night. We wish there was a way to thank them personally, but we hope they know how much it meant to us. Jodie did not make the paper this year doing her holiday shopping but she did put in many hours of making a list, checking it twice, finding sales, returning items, and doing all she could to make the kids Christmas special.
Our kids are learning, growing, enjoying school and activities, and we have enjoyed many wonderful memories as a family this year, and look forward to many more ahead.
Thank you for continuing to check on Jodie and our family and for your prayers and support!
Love Matt, Jodie, and family.
Thursday, November 23, 2006 2:02 PM CST Happy Thanksgiving!
We wish you all a wonderful holiday and hope you are spending it with people you love or have not seen for a long time! (I guess it could be a combination of the two!)
We are staying close to home, and figured out a fun way to give Jodie and Kim a break from the stressful art of cooking a big dinner. We are going to the Cattle Company’s all you can eat Thanksgiving Day buffet. We are sure it will have turkey and such but I am hoping it has some steak as well!
Jodie is doing much better than two weeks ago although she has had some challenges with different aches and pains but we have worked things out with medication and rest. Katie and I had the flu but we worked through that as well.
Happy Thanksgiving to all!! We miss you Charlie and Jean!
Thursday, November 8, 2006 6:06 PM CST **UPDATE** Jodie is doing better. We were able to get her some antibiotics and that seemed to help her recover. She was out and about shopping today so that is a good sign. We were able to take Tanner out for his birthday also which was something we had been postponing until she was better. THanks for checking...
Saturday, November 4, 2006 1:06 PM CST
WE HAVE OUR FIRST TEENAGER!!! Thirteen years ago after 26 hours of labor in a hospital in Layton, Utah, Jodie gave birth to our oldest son Tanner. I remember how wonderful she looked as a new mother holding a small infant. We brought Tanner home to our little house while I still had two years of college. Jodie spent the next few years growing into her role as a mother. Cancer was the furthest thing from her mind then. Three more would follow until Katie was born in 2000. I know she has grown as a mother today. She loves each of her children and they are without a doubt the most wonderful blessing in her life.
Jodie’s recovery lasted about a week before she began to feel sick again with a very bad cold. She has managed to spend time with a friend doing something she loves. Organizing and decorating a room belonging to her friend. Whatever she has seems to have really wiped her out over the last few days. Her body and immune system are just not as strong and things just really zap her energy. I am sure we will probably need some antibiotics or something to get her over this, but I am confident she will recover if she can get lots of rest this weekend.
We had a wonderful Halloween. The kids enjoyed dressing up for a city carnival and for our “Trunk or Treat” held at church. I wish they had those when I was a kid. There were about 200 cars parked in a small parking lot. Jodie and the kids just love to get excited about holidays.
We hope you all enjoyed Halloween, and wish you and your families the best. We bump into people all the time who tell us that they still check in this website and we appreciate your kindness and support.
The Clarks.
UPDATE: Sunday, 10/29/06 Jodie was feeling better by the middle of last week and had a good weekend. We think she just had a bad cold/sore throat and now she is doing much better. Thanks for checking.
Sunday, October 22, 2006 7:24 PM CDT
Happy Halloween to everyone. We are awaiting our first snowfall which usually hits around Halloween. Fall has been beautiful and we have enjoyed living in Alaska due to the wonderful color changes of the leaves. We were able to enjoy a grand demonstration of them on a recent family motor home excursion in late September. Some friends of ours let us borrow a very nice Class A motor home with a slide out living room. We drove about 3 hours to a spot on the famous Russian River and enjoyed almost the entire campground to ourselves. Jodie was petrified of the bears as we enjoyed a nature walk down to the river. We never came across any but the place is famous for bears feeding on dying salmon in the river. Someone we know was even recently chased from a good fishing hole by a big brown bear near the spot we were in. We later moved to an even better spot with a “open the door” to Skilak lake 40’ from the door. The lake is part of the Kenai River system, and is one of my favorite places in Alaska. It was a beautiful calm evening and we enjoyed the sunset and roasted marshmallows and ended the evening watching “RV” with Robin Williams with little bags of popcorn. Our experience was much more tame let me assure you all. We have so enjoyed these opportunities to make memories as a family.
Jodie has experienced a bit of a roller coaster with her health the last month. At one point she was really doing poorly and we thought perhaps there were new problems brewing. What it ended up being was too high of a concentration of pain medicine. It was not that the dose was too high but rather the frequency the doctor had us try. We had hoped that switching to three times a day would even out the dose Jodie was taking rather than it wearing off while she took it twice a day. So we found out that three times a day was causing a build up effect and Jodie could not shake a feeling of lethargy and being sleepy all day. The doctor ended up increasing the dose a little but going back to twice a day, which really seemed to help a lot. Jodie continued to have a little break through pain and some difficulty with it wearing off an hour or two in the evening but it seemed to be much better than the three times a day problem.
Recently, the last few days, she has come down with something that has really been tough for her. She was not able to do much this weekend including staying home in bed and missing church today. We hope it is just another bump in the road that she can overcome soon. Not quite sure what it is (cold, sore throat, virus etc) but when she gets something it hits a lot harder because of her cancer. She worries each time she feels a new ache, or pain, or feeling of poor health, and yet always manages to rebound and keep moving forward. We were all able to celebrate Katie’s 6th birthday and Jodie and I had the pleasure of taking her out to TGI Fridays, a place Katie has been excited to try.
When she feels well, Jodie continues to love life and finds many opportunities to serve others. She did a wonderful awards night for the young women at church. She put together a wonderful slideshow with pictures of the girls at different activities throughout the year. She set it all to music, and later had the girls fathers’ participate in the program by telling the group what was special about their daughters. It was really a great opportunity for Jodie’s talents to shine
We thank you all for your thoughts and prayers and little notes of encouragement in the guest book. We know you will all be blessed for your concern and care. I will try and update as soon as Jodie feels better.
I can not close without one last thought. We recently learned of Mike and April Miller’s (linked to our site) wonderful news of their expecting twins. While most of the praise should go deservedly to God for his wonderful blessings, I can not help but think of the many prayers from friends and family as well as the huge medical advances at the Fred Hutch cancer center (and other places people seek treatments around the country) helped make that possible. It is truly a miracle and victory over cancer. Many of you may remember that Mike has had multiple re-occurrences of cancer and was in and out of the hospital for much of the year after his bone marrow transplant. He has also had much trouble with his eyes lately and it seemed for a while they needed some good news! How wonderful for them to enjoy! Way to go Millers!!! And congrats on the deer hunt!
Friday, September 22, 2006 5:46 PM CDT Hello everyone!
It has been another month since we have updated last. Things are going well here in Alaska and I just wanted to keep you all updated on Jodie and our family.
Jodie is still doing well. She had been experiencing some breakthrough pain and discomfort from her cancer and continues to have small progressions with numbness from her chest down. We have changed her pain medication a little bit (a slight increase and different dose schedule) which has seemed to help. She has only been on the new schedule for a few days so hopefully it will give her some comfort back. She is happy, busy, and doing well.
There has not been much notable going on in our lives other than school for the kids, and plenty to do around the house. We have really enjoyed the summer and are embracing fall as the onset of winter is coming. The kids really seem to enjoy school and for the first time Jodie has the whole day to herself while the kids are gone. She loves to work at the kid's schools, and particpate in activities with the young women of our church.
We continue to pray each day for continued health for Jodie and for all of those who have had struggles. I know she loves the support she has felt from you all. Thank you and god bless each of you and your families.
We will update again next month.
Love Matt and Jodie.
Friday, September 22, 2006 5:46 PM CDT Hello everyone!
It has been another month since we have updated last. Things are going well here in Alaska and I just wanted to keep you all updated on Jodie and our family.
Jodie is still doing well. She had been experiencing some breakthrough pain and discomfort from her cancer and continues to have small progressions with numbness from her chest down. We have changed her pain medication a little bit (a slight increase and different dose schedule) which has seemed to help. She has only been on the new schedule for a few days so hopefully it will give her some comfort back. She is happy, busy, and doing well. She loves to work at the kid's schools, and particpate in activities with the young women of our church.
There has not been much notable going on in our lives other than school for the kids, and plenty to do around the house. We have really enjoyed the summer and are embracing fall as the onset of winter is coming. The kids really seem to enjoy school and for the first time Jodie has the whole day to herself while the kids are gone.
We continue to pray each day for continued health for Jodie and for all of those who have had struggles. I know she loves the support she has felt from you all. Thank you and god bless each of you and your families.
We will update again next month.
Love Matt and Jodie.
Tuesday, August 22, 2006 9:36 PM CDT Well we made it back as you can see (we have been back since the 10th) and have been running ever since. We had so much fun in Utah that I am not sure we can cover it all in a few paragraphs but I will try.
First of all, if you are one of our friends or family who live in Utah that we were unable to see we apologize. There are at least 20 that we can think of. As usual, we had 30 activities planned with only 14 days to do it all in. What we were able to do was so much fun and such wonderful memories.
Our list of fun included 3 days at Bear Lake in Utah/Idaho. The weather the entire 14 days was sunny and hot (almost a 100 everyday) which was very intense for us cold blooded Alaskan’s. We have lived here 6 years now and have forgotten what it is like to live in such a warm sunny climate. We did boating and water skiing, wave runners, swimming, great barb-q’s . We then had some time with Jodie’s family, which was great. We went to the Tim McGraw and Faith Hill concert with my brother and his wife. We went to Lagoon (amusement park) and also to the Cabelas' super store!
We were able to do 4 wheeler rides (which the kids could not get enough of), and a little fishing at Strawberry lake. We were able to travel down to see historic sites and spend time in Cedar City with my brother and his family. We just had so much fun. Jodie was able to spend some much needed time with her family and we just had a wonderful time.
Jodie has been feeling great as she describes. Nothing has gotten worse, which we count as a miracle each day. If you read the last few journal entries you will see that she has been busy, and with the miracles of modern medicine manages to keep her symptoms under control.
Our three oldest kids started school today and Katie our youngest starts kindergarten next week. Tanner our oldest started seventh grade (middle school) which is making us feel older.
We often think of how blessed our family has been, and wish to continually thank those who tell us they still check the website and pray for our family. We hope each of you are as blessed as we have been.
Matt & Jodie.
Saturday, July 8, 2006 11:32 AM CDT I know it has been a long time since we have done an update. Jodie has been very consumed with preparing for the young women’s girls camp coming up in a few weeks. She has been living the life as a soldier to get in the right frame of mind for BOOT CAMP. (That is the theme this year). She has really put a tremendous amount of effort and love into this project. I wish I could say more but I don’t want to spoil the surprise (in case one of the young women or their mother’s is reading this). Just know that all of Jodie and Kim’s creativity has come shining through in all of their little trinkets, t-shirt design, songs, games etc.
Jodie’s health has been holding pretty steady. She remarked to me how amazed her doctor is and really does not have the words to describe how medically it is possible to be remaining at this level. Jodie has figured out when her good times are and when she struggles and has adjusted her life accordingly so she makes the most of every minute of the day. She still has lots of pain in the morning and night and gets very tired at times but she gets her rest when she needs it, and she saves her energy for using it on fun things like taking the kids places enjoying family activities and doing her projects.
Some recent activities have been the boys going to scout camp for a week, the girls have been enjoying their summer as well. We all enjoyed the 4th of July parade and walking around the little carnival. We even stayed up until midnight and went to the fireworks display in town. We got home at 1:15 AM so it was a late night but we had a blast.
We are all gearing up for a family vacation soon to visit my family and Jodie’s family in Utah. It should be a wonderful time.
We are most grateful for all of our blessings and feel that many prayers have been answered as we enjoy each day. Many of you still tell us that you check this website still and we thank you for your love and concern. We pray that you may each enjoy the same blessings and time with your families. The Clark’s.
Saturday, May 27, 2006 11:17 AM CDT Greetings on this Memorial Day weekend. I am sure many of you are out traveling around with family. As a short update I wanted to tell you Jodie has had some pretty good days since I updated last. She still deals with all of the same issues, but has been able to get out and get a lot done lately.
Some of the highlights included going to Katie's preschool graduation, Hayden's talent show (he did a ventriliquist act with his puppet George), and taking Emmy and Katie to TGI Friday's. School will be out soon.
The weather has turned green and beautiful here, leaving us a desire to be outside. The days are getting longer where we have plenty of sunshine at midnight, so you always forget what time it is. Sunsets in the northern horizon are strange at 1:00AM but we love them!
We wish you all the best, it may be a few weeks to a month between updates as we do not have as much to report, but we appreciate your love and concern for our family.
The Clarks.
Friday, May 19, 2006 12:01 AM CDT UPDATE: Jodie finished the room last night and it looks great.
Wednesday, May 17, 2006 12:01 AM CDT Another week has gone rushing by. Thanks for checking in on Jodie. So many people continue to do so. Jodie and I really want to thank you for doing that. She has been feeling about the same (tired) lately. Yesterday she had a better day but she still seems to feel very tired with not much energy. I know it is really hard for her because she has so many things she wants to get to and just has not seemed to have the energy. I think it is starting to affect her emotionally some so send a little cheer her way if you have the chance. If there are any of her friends that would be excited to come and help her finish painting Hayden’s room I bet she would enjoy that. It has been something that she just has not been able to do. Naps seem to help her.
Jodie is also continuing to work on putting together a week long camp for the young women ages 12-18. I am not sure I am allowed to talk about the theme of it (it may be a surprise to the girls) but I can tell you Jodie has really enjoyed having something like this to work on.
Last night Jodie and I got to go and watch Emmy sing in a school chorus performance at her school. Emmy did wonderful and Jodie and I had huge smiles on our faces. By the way, speaking of Emmy, I took her and Katie camping with their friends Marcie and McKalea in Whittier last weekend and the girls really enjoyed themselves. They walked on the beaches and even helped me catch some shrimp. (We caught 45 that day). They were cold some of the time but patient enough to let me set the pots again and it paid off. 175 shrimp last night! Camping with little girls instead of boys was a little different but they still loved to put sticks in the fire just like our boys.
The boys had some neat accomplishments this week too. Tanner one first place at a multi school math derby and Hayden has been doing great also.
We had a great mother’s day which was topped off by a crab and shrimp feast for Jodie. (Crab store bought, shrimp? You guessed it caught by Forest Gump!
Please say a few extra prayers for Jodie that she will feel better.
Wednesday, May 10, 2006 11:37 AM CDT Hi Everyone, I know, it has been a while since I have updated. Jodie has had some good days and bad days lately. For a while there she was feeling really good, but has recently had a few days where she has not been feeling too great. She has really struggled with her energy again and feels a lot of aches. It is really a tough thing to describe but when she does not feel well, she has almost flu like symptoms where she aches all over and just feels really tired and achy (not sure if that is a word). We are never really sure what causes the changes but hope things get better for her soon.
As for her painting project she has not been able to finish this yet due to some of symptoms above and just being plain busy. She is getting closer to finishing everyday and hopes to be done soon. I know she has had to redo a couple of walls because they were not to her artistic liking. Regardless, it is so fun to see her down there covered in paint with a smile on her face. I am so proud of her and enjoy seeing her do the things she loves as it reminds me of the gift we have been given.
The kids and I are doing well. Emmy and Katie are running wild outside now, and Katie has recently learned to ride her bike without training wheels. Crazy thing was I took them off, and let her start on the grass baseball field in case she fell. She took right off like there would be no problem. I quickly learned that as long as she has wide open spaces she is fine, but on the way home from school she and I had a long ride home. It seemed every 10 feet she went she was drawn off the edge of sidewalk and kept screaming and crying “I can’t do it” We finally made it home and once she was on the wide street again she was fine. The girls and I are planning an exciting camping/halibut fishing trip in Homer with another dad and two girls Emmy and Katie’s age. It should be lots of fun if the weather is nice.
The boys are doing well also, and always enjoy being told to clean their room and getting to play outside. They love to ride Jodie's price is right bike. The whole neighborhood does actually. Tanner recently took a fun overnight field trip with school and Hayden is going to be in the school talent show with his ventriloquist puppet George. Hayden has always been a HAM so I am sure he will do great.
I have finally learned the Forrest Gump art of shrimping. Lt Dane and I started off slow but have now begun to figure things out. My first trip yielded 4 shrimp in 5 pots, second trip 1 shrimp in 5 pots, third trip 25 in 5, and last night Kendall Gee and I had 96 in 5 pots. We still have room to improve as my co-worker reminds me he caught 150 in 5 pots. At this rate I do not even want to attempt to calculate my cost per pound of shrimp but it was never about that anyway. Something fun to do with friends and the kids.
Well, thanks for checking in with us, thanks for your prayers and support.
The Clarks.
Monday, May 1, 2006 8:55 PM CDT Well it is official. Jodie is feeling better because she is downstairs painting Hayden's room. Crazy I know. We decided to give Hayden the Price is Right queen bed so that meant she needed a new bed spread and of course the walls need to be painted to match! I love to watch her get excited about a project because it is the real Jodie.
As far as her being sick so much the last month, it took her a while to get through whatever she had. All of us got it (a chest cold, sinus infection, low grade fever etc). As you can understand it hit Jodie particulary hard as she has all of her other issues to deal with. She has not had much progression or new pain though.
What she has found is if I wake her up an hour before she needs to get up and give her all of her medicine that she is able to wake up and have a pretty good day. She still gets very tired in the afternoon and sometimes needs a nap but then she takes her evening dose and gets a second wind about 10:00PM.
The boys and I have been trying our hand at setting shrimp pots hoping for dreams of many giant prawns. So far all we have to show for it is 5 shrimp. 4 on the first trip and one today. I guess we should stick to fish! We have had fun trying though.
The rest of the kids are doing great. We got the new Price is Right workman tricycle put together now that our snow is finally gone. The kids have been having a blast with it Go to this website to see what it looks like
http://www.worksman.com/sidebyside.html
Thanks for checking in. There are miracles around us everyday.
Monday, 04/24/06, Update, Jodie has been feeling better. Antibiotics worked again!
Thursday, April 20, 2006 10:11 AM CDT
Quick note before work. Jodie has had a really bad week. The sickness she had has either returned or she caught something new. Whatever it is has really wiped her out. She has a sinus infection/head cold/sore throat something that has zapped what little energy she usually has.
She went to the doctor last night and got some antibiotics. He said he would not have given them to her if she did not have cancer so I guess that means he was not too concerned.
In any case, we pray she will rebound from this quickly. As always, we have faith, but each time she gets sick we always get a little worried it is something more.
Thanks for checking in.
Matt & Jodie.
Friday, April 14, 2006 6:57 PM CDT Has it been a week already? I guess it has. More than anything I just wanted to report that Jodie’s energy has improved again, and it did so without any adjustment to medication. Our best guess was that it revolved around being sick the weeks before. We are looking forward to Easter.
Like many in the world, our thoughts are drawn to being grateful for the resurrection and atonement of Jesus Christ. Jodie and I place a great deal of faith in the reality of those blessings and what they mean to our family.
Our kids are doing well, we moved the boys from Roger’s Park to Klatt Elementary (our local neighborhood school). This has been nice for Emmy to have some company and for Jodie to have them close. They boys and I are going on a big camping trip that involves setting shrimp pots and playing on the beaches of Prince Willam Sound on Monday and Tuesday. We hope the weather holds up so they are dry and happy instead of wet and miserable.
Today Jodie took the girls out for a fun breakfast today and a trip to the museum to see Emmy’s art work on display. Emmy has been very anxious for us all to see them.
That is about all, we wish you all a great weekend. Thanks for checking in with us and for your prayers on our behalf.
Love the Clarks.
Friday, April 7, 2006 5:44 PM CDT Hello again. Thanks for checking in on Jodie again. She has been feeling pretty tired and run down this week. She seemed to be doing really well the first few days of the week, but the last 3 or so she said she has been running out of energy during the middle of the day. We are not sure but we think it may be the thyroid acting up some again. Jodie plans to go back in and have her levels rechecked, as they may need to adjust her medicine a little. We hope that will do the trick.
Other than that, all is well. Emmy was sick all week so she stayed home and kept mom and Katie busy.
We will be sure to update with more if anything changes soon.
Matt & Jodie
Thursday, March 30, 2006 1:49 PM CST **UPDATE SATURDAY** Jodie is feeling much better, her sore throat is gone, and her energy level has returned. Nothing like a good dose of antibiotics!
Jodie has not been feeling well for the last 3 days. It has developed as a sore throat that has also caused her to feel very tired and just plain sick. She went to the family clinic yesterday and the doctor gave her some antibiotics. We hope it is just strep or some other type of common illnes that she can rebound quickly from.
I will try and keep you all posted.
Friday, March 24, 2006 9:56 PM CST Sorry once again for taking so long to update. I am surprised anyone even checks anymore, but people tell me that they do, so I will try and keep up. Jodie is still doing well, and we are glad about that. Her thyroid levels have leveled off to normal thanks to the new medicine she is taking and the doctor told her all of her labs are normal. What a blessing modern pills can be. A couple of times Jodie has recently been about to run out of medicine due to a few getting dropped down the sink or lost, and had only had enough to choose between taking the last dose that night, or the next morning before she could get more from her doctor. What we found out is that it was that Jodie was in a great amount of discomfort without them, so we know what a blessing the medicine has been. She has even been walking on the treadmill almost every day and has found that has improved her stamina. People often wonder if she is in remission or if she still has cancer. No, she is not in remission, but she is just doing great. The cancer is just being held at bay by something. What a blessing it has been.
We survived spring break! Just yesterday the entire family went to H2Oasis (the 5th largest water park in the United States, Anchorage needs such a thing you know! There is still plenty of snow around here so going to a water park is a real treat for us in March! Jodie and Emmy rode the “Master Blaster” a very fast and wild waterslide and Jodie and Emmy both wanted to get off half way through! The rest of the time we floated around the lazy river (a river that makes a circle around the park) enjoying the warm water and watching the girls learning how to swim. It was a great day.
I guess Jodie and I have reached an old age because tonight all the kids were asking Jodie and I to tell them stories about when we were young. When I told them I used to have a job washing dishes by hand in a pizza place, Emmy remarked quite seriously to the other kids “Ya, they didn’t have much electricity back then!” I guess that should make our parents feel like they rode in horse carriages?
Thanks for checking in, we love and appreciate all of you for your continued support.
Monday, March 13, 2006 1:47 PM CST Just another quick update so people are not always seeing the same stuff when you check. I made it back from training in Georgia on Friday night, and found all was well at home.
Jodie and the kids did great without me. Jodie continues to feel well, and is busy with a new opportunity to serve in our church. She is working with the young women ages 12-18 on helping them set and accomplish personal progress goals. This has given her the opportunity to make fun hand outs and spreadsheets to keep track of things on the computer, something she loves to do. Just a year ago she was very sick with chemo, and was really having a tough time. Jodie loves to tell people she is living on miracles, and appreciates each day, and we have faith she will have many, many more to come.
The kids are doing well, and Tanner has learned how to put in his contacts! Small miracle here! It is still cold and snowy here, but the days are getting longer, and soon it will be spring!!
Thanks for checking,
Matt & Jodie
Sunday, March 5, 2006 8:14 AM CST Like the Miller's website, no news is good news. I have been in the warm state of Georgia for training, and Jodie is home with the kids.
Aside from issues with the kids homework, Jodie reports all is well.
She and the kids were very excited to have Jodie's mom and Charlie return from New Orleans where they have been living for the last 6 months. Jean works for the Army Corps of Engineers and had been on a temporary assignment to help with the reconstruction effort. We are glad to have them back!
Thanks for checking!
Matt & Jodie.
Wednesday, February 22, 2006 1:54 PM CST Hi everyone, this will be a really short update. Jodie continues to do well, the thyroid medicine seems to have helped her as she reports not being so tired all of the time. She has been very pleased with the results of the medicine, and in conjunction with the rest of them, she says she feels really good most days.
All is well here, no major events to report on other than Tanner's new contact lenses. The boy is hard on his glasses, so we were excited for him to try these out. We are still having a tough time putting them in, as I had to do it for him this morning. But he has already noticed the freedom this will give him. Hopefully he will be able to master the art of placing plastic in one's eye without blinking!
Thanks to all of those who continue to check in on and pray for Jodie's health.
Saturday, February 11, 2006 1:25 PM CST Happy February to everyone! I wanted to make a quick update to let you all know Jodie reports a slight improvement, and is doing well. She is still investing every ounce of energy she has into the kids, church, taking care of the house and other little projects she has on the side. She works hard, and then needs a rest, but is really doing great.
I am in a walking cast/boot now so I have been able to get up and around a little more to help. That has been nice for me to have a little freedom/mobility back so I can contribute.
The kids also continue to help and contribute, (they are really good at contributing to making the mess) and with some prodding even help to clean it up once in a while. Emmy was awarded the student of the month for her entire school last week, and it was a joy to watch her smile with her certificate.
Wanted to share something else funny about Katie (5)...after a bout of diarrhea she screamed from the bathroom for some "Desipin," because her bottom was burning. After explaining to her that Desitin was really only for babies, and she would be ok in a few minutes, once again, she yelled from the bathroom, "If I can't have some "Desipin," can I at least have some "GASOLINE?" That works really good on my bum!" Knowing that for sure she meant and had used some "Vaseline" we finally managed to stop laughing.
I am still hoping Jodie will be able to do an update but often feels like she has more things to do than she has energy for. That includes emails and phone calls to friends, something she loves to do but just can’t seem to get time to do. She hopes you all understand.
Saturday, January 28, 2006 5:00 PM CST Well, as you can all see, Jodie's furniture arrived from The Price is Right. She wants to do an update soon, but I wanted to put this on there for her! As you can imagine, she is thrilled it arrived, and she thinks it looks even better than she pictured when it flashed up on the stage!
More from Jodie soon.
**UPDATE**
Jodie has not been able to update this, and asked me to. She is still very busy, but has not been feeling great the last few weeks. Her thyroid levels have been elevated and it is causing some difficult side effects (mostly making her very tired during the afternoons, and lack of stamina). We are not sure of the cause, possibly from the radiation last year. She had this problem earlier in a more mild form in November, tried to take some medication to help with it, but she did not like the side effects of that medicine. Since the thyroid levels have increased to a higher level than in November, she has gone back on the medication. Please pray that the medicine will give her some relief, without causing too many side effects, so that she can continue to feel well enough to do all that she wants to. We thank you all for continuing to check on Jodie, for your love and support. The guestbook has been quiet lately, but we see how many people check. Thank you!
The kids are doing great, and hopefully Jodie will be able to update next time. Hope you enjoyed the pictures of the furniture, we have not gotten the bike yet. It was -10 below 0 last week so it would be a while before we could ride it anyway!
Thursday, January 19, 2006 4:56 PM CST Another week has flown by, and we are Busy! Busy! Busy!. Jodie continues to do about the same, not much new to report. Good times of the day and bad. Mostly just happy and busy.
We enjoyed the 3 day holiday weekend. We had some friends over for dinner. Tanner gave us a nice summation of Dr. King’s life and accomplishments, and Jodie made a great dinner. Jodie is still puzzled about why she could not find the butter to serve with the bread, and then eventually found it two days later. It makes me smile because she made a perfect meal, down to every detail, but was frustrated and embarrassed we did not have any butter. It was hiding in the back of the refrigerator the whole time.
Jodie and I continue to enjoy moments with the kids, sometimes they are frustrating moments in the world of forgotten homework and bad progress reports, but we joy in ones that involve those that involve funny things the girls say. The other night Jodie, Emmy and Katie and I were watching American Idol. One of the horrible singers kept singing the Reggae song "I shot the sheriff, but I didn't shoot the deputy." It was so bad they let him sing it over and over and over just for the entertainment value. The song stuck in Emmy and Katie's head because they kept singing "I shot the Sheriff, but I didn’t shoot the "F" "U" "T"!!!
No matter how many times we laughed and tried to pronounce it for them Katie was convinced it was "F" "U" "T". Emmy finally got it but Katie still sings it her way.
Anyway, that is about all for this week. I will point out that we are starting to get 4 more minutes of daylight today, and we enjoy that. It has been very cold so more light means summer is only 4 months away!
Wednesday, January 11, 2006 11:17 AM CST My apologies to all of our family and friends who have been checking this website only to find we have not updated since the 1st. We have been swamped with things to do! As you probably read on our last update I tore my Achilles tendon playing church basketball and had surgery on New Years Eve to have it repaired. I never really liked basketball anyway, and now wished I had not chosen to “get a little exercise” after taking a 10 year break from it. I am in a cast (my newest one is glow in the dark) for probably the next 2-3 months, and will be on crutches for at least another month.
This has placed a great deal more of the work load on Jodie as you can imagine. I have been useless sitting in the recliner with my foot up. I went back to work on Thursday of last week, but am really useless when I get home. Jodie has gone back to doing all of our household chores in addition to those she was already doing, (and is doing a wonderful job I might add!). We are managing quite well so no one needs to worry about doing anything extra or anything. Jodie would have it no other way.
Jodie continues to have energy to do most things she wants to. She does experience a difficult hour or two during the day (usually in the morning and at night around the time it is time to take more medicine) but is she is happy, busy with lots of things, and is doing really well.
We still do not know exactly when or how Jodie’s prizes from the Price is Right will be delivered, but I know she is excited about that.
The kids have been sent back to school after two weeks of being around the house. We love them so much and enjoy the cute wonderful things they do, but find it is very difficult to keep them off of each other and out of trouble. We have also found that the house stays much cleaner when they are at school (and in my condition that is important) so off to school you go kids!!
We continue to be grateful for all of our blessings, our friends, and family who support us day after day. I have been thinking about the publicity generated by Susan Butcher, a four time Iditarod sled dog race winner was diagnosed with AML. She is at the Seattle Cancer Center, receiving the same treatments as Mike Miller, Rhonda, and Jodie, and it makes me so thankful a place like that exists and for the many blessings which came our way to make that happen for regular people like us. The incident sparked a bone marrow donor drive and an increase in blood bank donations in our community. I hope we all take the opportunity to help where we can because there are so many people out there who depend on these products and treatments to literally sustain their life.
Wishing you all the best this new year, the Clarks.
Sunday, January 1, 2006 4:44 AM CST
HAPPY NEW YEAR!
Sorry for the long pause between updates. Our life has been so busy with the holidays. My mom flew back home from Louisianna for three days during Christmas, so we wanted to spend as much time as possible with her, and then normal Christmas "business" took ever other available minute. Just when thing started to slow down a little and I actually thought I could post an update, Matt tore his Achilles tendon Wednesday night while playing church basketball and had to have surgery yesterday (Saturday) morning! Other than that, we had a WONDERFUL holiday.
We enjoyed many Christmas cards, letters, and messages from lots of you. How fun it is to get an update from friends and family at the holidays. We love, love, LOVE Christmas letters so much that we fight over who gets to read them first--like the few minutes of not knowing really matters! :) So thank you to those of you who dropped us a line this Christmas--whether by card, letter, computer, or phone. We send back our love and thoughts to each of you, and to all of you who have followed our journey these passed three years, we send out our deepest appreciation and thankfulness for your support, love, and prayers and all the other little ways that you each have blessed our lives. As we embark on THIS new year, we do so with much faith and hope and thanksgiving to a loving Heavenly Father who has performed so many miracles in our lives. We are and have been blessed in innumerable ways!
Jodie and Fam
**I've got to get to bed. It is 2 a.m. and I have to give a talk (speech) tomorrow at church and teach my 9-year-old primary (children's) class. I'll update with more thorough information in the next week!
Thursday, December 15, 2005 9:09 PM CST Well, things have been busy around here as usual. After the fun of the Price is Right, (I can't believe how the excitement of that day came right back as we watched the show on the big screen. I think I might have scared a few, unknowing customers at the Peanut Farm with my screams and cheers!)we headed right into the excitement of Hayden's 10th birthday! Wow, these kids grow so fast. Every birthday with each of them is a bit of a miracle for me. We went to the Royal Fork for dinner--that is my boy's favorite, FAVORITE restaurant--and then returned home so Matt could rush off to a meeting. Last night we had a Christmas party with Matt's Office, and tonight Tanner, Hayden and Matt are gone doing church activities, Scouts and basketball. Poor Hayden STILL has not been sung too. The cake has been ready and waiting since Tuesday and let me tell you, I have tried to think of every excuse to cut into that thing!!! It is a chocolate cake with chocolate mousse filling--COSTCO, of course. I have showed some REALLY good will power, if I do say so myself. I guess the singing will just have to wait another hour or so.
We are in the full swing of Christmas, but, like the cake, the Christmas decorations have been setting waiting to be hung. The tree has been up for three days, but I haven't straightened the branches or plugged in the lights yet! Before I had cancer, I would stay up half the night if things were not done, but now my body doesn't let me do that, so if there is no time and noone willing, things don't get done. Actually, just having the big tree up has made it feel pretty Christmasy around here.
Katie and Emmy just came out of their room with towels around their shoulders, bathrobes and goggles on, and announced that they were ready to go swimming. Tonight is their bath night, so I proceeded into the bathroom with them and, playing along, I asked them if they were going to perform the breast stroke or the butterfly. Katie looked at me, through her gogled eyes, and said, "No, Mom. I am going to do something much harder--a bob!!" They both are like fish in the summer in the lake, but they have life jackets on and very rarely CHOOSE to put their faces under the water.
We learned a few days ago that Grandma Jean and Grandpa Charlie get to come home for three days at Christmas. We are so excited! They arrive on Christmas Eve so I have kidded with the kids saying they will arrive on Santa's sleigh. He couldn't bring a better gift! We miss them!
The kids are out of school next week until January 3rd, so I hope we can find some game-playing time in there somewhere.
Thank you all for your comments about the Price is Right. I wish that I could see all of you on a show sometime! I felt a little silly--sometimes a lot silly--but as I watched it I had to admit that that is really how I act. Do you feel so sorry for my poor husband now? I kept looking at all the other contestants wondering how they could stand still and act like normal people! :) My most embarassing moment was definitely when I almost fell over at the wheel. Because my numbness is the worst right in the middle of my body and down my thighs, it is very hard, if not impossible, to go into a "squat" and then recover from it. National t.v. is not the best place to display those sorts of difficulties, but I'd do it again if it meant I could have that same experience all over again. It wouldn't do it again without Kim and Holly.
The Christmas countdown is well on it's way at the Clark household. Santa's list keeps changing; the Manger scene keeps moving; the Christmas cards keep coming; and the days keep passing by! Christmas will be here before we know it.
Jodie
Wednesday, December 7, 2005 11:24 AM CST WE ARE HAVING A PRICE IS RIGHT VIEWING PARTY ON MONDAY, DECEMBER 12TH AT THE PEANUT FARM IN ANCHORAGE. EVERYONE IS INVITED. COME AT 9:45 A.M. SO WE CAN BE READY WHEN IT COMES ON AT 10 A.M. APPARENTLY THEY SERVE A GOOD BREAKFAST, SO WE WILL BE ABLE TO ENJOY A GREAT MEAL WHILE WE WATCH! WE TOLD THEM THAT WE COULD HAVE UPWARDS OF FIFTY PEOPLE...OR MAYBE ONLY TEN :)! KIM SAYS THEY HAVE SEVEN TELEVISION SCREENS ALL AROUND THE RESTAURANT AND ONE SPECIAL BIG SCREEN. I AM BRINGING KATIE AND, HOPEFULLY, MATT WILL BE ABLE TO BE THERE, SO COME AND SHARE THIS EXPERIENCE WITH US! KIM AND I ARE PROBABLY GOING TO HAVE TO EXPLAIN OUR PRICE-IS-RIGHT BEHAVIOR, SO DON'T JUDGE US TOO HARSHLEY! I AM EXCITED TO GET ANOTHER LOOK AT MY PRIZES! HOPE TO SEE YOU THERE!
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Happy Holidays to everyone! I love the Christmas season, and I am so grateful to be enjoying it with my family. The last few weeks I have really been overwhelmed with the blessing of time with my family. It is almost a year since we found out I had tumors in my spine, and I cannot forget the attitude of all the doctors that we saw during January. Each one made us feel just a little less hopeful that something could be done, and Matt and I both started to think, for the first time, that I might not be around much longer. It was the worst time of my entire life, but then, as I prayed and asked for answers to "what is Thy plan for me?," that sweet peace returned again and again, reminding me that whatever plan He has is a perfect plan and it was not His plan for me to be gone just yet. I still have children to raise a little longer. Two weeks ago I saw the same Nurse Practitioner that gave me the bad news about the new tumors last January. Although she knew of my case and the "goings on" of my life, she had not physically seen me since I was going through chemo. As we talked, we shook our heads in amazement and thanksgiving. At the end of the exam she said she wanted to see me walk. It took me a little by surprise, but then it made me realize even more the miracle of my life. As I got up to show her that, at this point, the tumor has hardly any affect on my walking, and as I watched her amazement, I remembered, once again, how scared everyone was and how, in January, the doctor's office thought I might need to be life-flighted down to Seattle because of the affect the tumor would have on my body. **If there is anyone out there that reads this website that doesn't believe in miracles or thinks that they have never seen one, YOU HAVE NOW. If people wonder if prayer really helps, tell them my story. Miracles don't have to happen only in total healing. I know that many of you have prayed for a miracle for me and my family and I can say, without any doubt, that your prayers have been answered, but I don't think this is the end of the miracles for me.** How grateful I am that so many of you have chosen to "take this ride" with me! Each person that leaves an entry in our guestbook and adds to the prayers that are going upward means so much to our family. Thank you for your love and concern and prayers for us.
In recent months, I have decided to change the "attitude" of my life and start living to live instead of living to die. I know that sounds so easy to everyone, but in doing that, I had to leave room for the fact that there might/will come a day when I will have to go through the grief of losing my life again. As long as I was living to die that wouldn't have had to happen. But I noticed myself starting to look at the calendar and say, "I can't schedule that because I might not be here," and I was not my usual, outgoing self, because I thought that making new relationships was a waste of time because I wouldn't be around to enjoy them anyway. But then there were a few bumpy roads in our life that were not because of cancer, and I realized that I hadn't been given this extra time to just sit back and let it pass me by (Thank you, Bishop Rindlisbacher!), and then I feel like I became the "old" Jodie (okay, I am almost 35!) again, and it has been so great to be excited about the things I used to love to do! It is a much more time-consuming way to live and much harder to fit everything important into 24 hours! :) But I need to and love to use all my time and talents that God gave me to affect people in a positive way. I wanted to do that for Him and as an example to my children. You have all read how much busier my life has been lately (if you haven't, please refer to journal history :) ), and that is because I am living. Like I said before, it was much easier to be dying and not taking on extra responsibilities or thinking outside my family, but that is not how I want my children to remember me. I am grateful that I still have work to do here in this life! As long as I keep affecting people's lives, maybe I get to stay! :)
So here we are, almost one year later, and all the thoughts that crossed my mind about being gone when Tanner turned 12 and at Christmas are far from me now. Somewhere in all that praying and learning, I have been given another wonderful year. Somedays, with all the business and "normalcy," I sometimes forget how precious each day is as cancer seems so far away, even though it is so close. I am grateful for this website that makes me remember. I have never thought of it that way before, but I guess, just like writing a private journal, this has helped us look deeper and appreciate more the blessings that we have been able to experience through cancer.
Well, of course, I sat down an hour ago to write a SHORT entry, and here we are now! I am grateful that I have been able to take this time to share with you my blessings, as I have been feeling a little down with the small amount of sunlight and the short days lately, and it is good for me to reflect on my many, many blessings through journal writing.
Today I get to take Katie to see Santa Claus. We are both really excited! She wants a drum set for Christmas. Yes, I know. It is every parents worst nightmare, but I am going to tell Santa it is okay with me if he has one in his sleigh when he arrives at our house! Like I said earlier, I LOVE the Christmas season. There is just something special in the air during December--Just don't try to go shopping or drive around the stores after 2 p.m. until after Christmas day! :)
One last thing, I haven't heard from the Julians in awhile, but they are always in our thoughts and prayers. Please say an extra big prayer for each of them during the holiday season. I know there is not much I can do, but a loving Heavenly Father can give them the peace they need to get through this first Christmas without Rhonda and that is my prayer.
Our thoughts are with you all at this most special time of the year!
Jodie
Sunday, November 27, 2005 9:43 PM CST Thought you all would enjoy reading this. (I had to edit it down a little because it was too long to fit, but I left in the part about Leon Barbachano as he is also a family friend). This article and photos were on the front page of the Anchorage Daily News on Saturday. How did this all get started? A reporter called Jenni Western (friend of Kim and Jodie) & Kim Lowry (Jodie's sister in law)and said she had heard Jenny was going shopping with a couple of friends that really love to shop. She asked if she could follow the three of them along. It was yet another fun experience/miracle Jodie could have after being so sick. The smiles on their faces says it all:
Anchorage residents hit the stores
Retailers draw consumers in droves with day-after-Thanksgiving sales
By SARANA SCHELL
Anchorage Daily News
Published: November 26, 2005
Jodie Clark still remembers the time she didn't get up early enough to shop the day after Thanksgiving. Nearly 10 years ago, she was part of a Washington throng outside of Target questing for a Tickle-Me-Elmo.
By the time she struggled in, the toys were gone.
"The big price tag is hanging from the shelf," Clark said. "I'm standing there looking at it. People are passing me by."
Just as the bleak vision of that missed deal propels Clark from bed before 5 a.m., the haunting specter of a shopper who stays home spurs many retailers to offer drastic discounts Friday.
Screaming deals right after Thanksgiving are insurance that shoppers will show up for the day that traditionally pulls retailers into profitability. Last year, though, The National Retail Federation said some retailers weren't aggressive enough with their pricing and learned lukewarm promotions don't get consumers out of bed.
"No one seems to be taking chances this year," said Scott Krugman, a National Retail Federation spokesman. Retailers offered hotter deals and opened earlier, he said.
To stoke the hype in Anchorage, shop owners and managers dangled such "door busters" as half-price freezers for $99, $370 off a laptop, and the hallowed special of half-off socks.
Customers bit hard. Some stood in predawn cold for hours, others spent the day gleefully zipping from deal to deal with relatives and friends.
Clark, of the missed Elmo doll, isn't one of those who waits in line all night for deals on big electronic items the day after Thanksgiving. Instead, she has honed her in-store shopping techniques with her best friend Kim Lowry.
"Last year we had Jodie's Suburban loaded up like a Christmas sleigh," Lowry said. If they found something they'd already bought cheaper at another store, they'd buy it again then return the first one, she said.
"Sometimes there is some buyers' remorse. We get that taken care of before the end of the day," Lowry said. And by the end, "you just feel like you've really accomplished something. We were pretty pleased with ourselves."
This year the friends brought walkie-talkies for when they take turns shopping and standing in line. No carts in Wal-Mart -- they slow you down. And they smile, no matter how packed stores are.
"We all knew it was going to be exactly like that," Lowry said. "You have to have fun or it's not worth it."
Across the road at Sportsman's Warehouse, John and Pat Holsman agreed.
"I was surprised to see how fast people get out in this town," Nolde said. "They really get after it."
Up the Seward Highway at Allen & Petersen Cooking and Appliance Center, Leon Barbachano wasn't surprised at all. For years, he'd sneak in a little morning-madness shopping -- one year it was a half-price DVD player -- before going to work. From the quiet store he managed, he'd watch a shopping frenzy unfold at Fred Meyer and Sears across the street.
When Allen & Petersen dropped cabinets and added kitchen gizmos, Barbachano saw the chance to bring that craziness into his store.
Thursday morning, Sheila Jones was the first to Allen & Petersen.
"I got here at 4:45 and she was already here," Barbachano said. The store opened at 6 a.m.
Jones said she'd never done the early-morning post-Thanksgiving shopping before, but the combination of a $99 5-cubic-foot freezer and a crack at the store's savings tree got her out. Barbachano said 250 coupons for $10, $20 or even $500 in savings hung on the tree were gone by 6:10 a.m. By 6:05 a.m., tickets for the 24 on-sale freezers were gone.
"Yes we're going to lose money on every single one of those freezers, but it gets people in the store," Barbachano said, and customers can compare the independent store's everyday prices with those of bigger chain stores. Plus it's just fun, he said at 7:25 a.m., as a baker brought down the latest batch of the morning's 350 cinnamon rolls.
"It adds to the excitement," Barbachano said.
HOPE YOU ENJOYED IT AS MUCH AS WE DID! As you can see, Jodie loves to shop with her friends and loves to make a point to smile and laugh and help other people to lighten up and have some fun while shopping.
Sunday, November 27, 2005 9:43 PM CST Thought you all would enjoy reading this. (I had to edit it down a little because it was too long to fit, but I left in the part about Leon Barbachano as he is also a family friend). How did this all get started? A reporter called Jenni Western (friend of Kim and Jodie) & Kim Lowry (Jodie's sister in law)and said she had heard Jenny was going shopping with a couple of friends that really love to shop. She asked if she could follow the three of them along. It was yet another fun experience/miracle Jodie could have after being so sick. The smiles on their faces says it all:
Anchorage residents hit the stores
Retailers draw consumers in droves with day-after-Thanksgiving sales
By SARANA SCHELL
Anchorage Daily News
Published: November 26, 2005
Jodie Clark still remembers the time she didn't get up early enough to shop the day after Thanksgiving. Nearly 10 years ago, she was part of a Washington throng outside of Target questing for a Tickle-Me-Elmo.
By the time she struggled in, the toys were gone.
"The big price tag is hanging from the shelf," Clark said. "I'm standing there looking at it. People are passing me by."
Just as the bleak vision of that missed deal propels Clark from bed before 5 a.m., the haunting specter of a shopper who stays home spurs many retailers to offer drastic discounts Friday.
Screaming deals right after Thanksgiving are insurance that shoppers will show up for the day that traditionally pulls retailers into profitability. Last year, though, The National Retail Federation said some retailers weren't aggressive enough with their pricing and learned lukewarm promotions don't get consumers out of bed.
"No one seems to be taking chances this year," said Scott Krugman, a National Retail Federation spokesman. Retailers offered hotter deals and opened earlier, he said.
To stoke the hype in Anchorage, shop owners and managers dangled such "door busters" as half-price freezers for $99, $370 off a laptop, and the hallowed special of half-off socks.
Customers bit hard. Some stood in predawn cold for hours, others spent the day gleefully zipping from deal to deal with relatives and friends.
Clark, of the missed Elmo doll, isn't one of those who waits in line all night for deals on big electronic items the day after Thanksgiving. Instead, she has honed her in-store shopping techniques with her best friend Kim Lowry.
"Last year we had Jodie's Suburban loaded up like a Christmas sleigh," Lowry said. If they found something they'd already bought cheaper at another store, they'd buy it again then return the first one, she said.
"Sometimes there is some buyers' remorse. We get that taken care of before the end of the day," Lowry said. And by the end, "you just feel like you've really accomplished something. We were pretty pleased with ourselves."
This year the friends brought walkie-talkies for when they take turns shopping and standing in line. No carts in Wal-Mart -- they slow you down. And they smile, no matter how packed stores are.
"We all knew it was going to be exactly like that," Lowry said. "You have to have fun or it's not worth it."
Across the road at Sportsman's Warehouse, John and Pat Holsman agreed.
"I was surprised to see how fast people get out in this town," Nolde said. "They really get after it."
Up the Seward Highway at Allen & Petersen Cooking and Appliance Center, Leon Barbachano wasn't surprised at all. For years, he'd sneak in a little morning-madness shopping -- one year it was a half-price DVD player -- before going to work. From the quiet store he managed, he'd watch a shopping frenzy unfold at Fred Meyer and Sears across the street.
When Allen & Petersen dropped cabinets and added kitchen gizmos, Barbachano saw the chance to bring that craziness into his store.
Thursday morning, Sheila Jones was the first to Allen & Petersen.
"I got here at 4:45 and she was already here," Barbachano said. The store opened at 6 a.m.
Jones said she'd never done the early-morning post-Thanksgiving shopping before, but the combination of a $99 5-cubic-foot freezer and a crack at the store's savings tree got her out. Barbachano said 250 coupons for $10, $20 or even $500 in savings hung on the tree were gone by 6:10 a.m. By 6:05 a.m., tickets for the 24 on-sale freezers were gone.
"Yes we're going to lose money on every single one of those freezers, but it gets people in the store," Barbachano said, and customers can compare the independent store's everyday prices with those of bigger chain stores. Plus it's just fun, he said at 7:25 a.m., as a baker brought down the latest batch of the morning's 350 cinnamon rolls.
"It adds to the excitement," Barbachano said.
Wednesday, November 23, 2005 4:45 PM CST Happy Thanksgiving everyone! We hope you are all about to enjoy a wonderful meal with friends and family. I know we are. Jodie is planning a feast at our home this year. I saw her to do list this morning and it is long! I know she would want to do this herself but she is working really hard on planning this meal.
As I drove to work this morning in a small bizzard I was in awe of how beautiful this earth can be, even in a blinding snow storm. It just seemed like I was flying a plane through swirling clouds of snow, everything covered in white, it was just beautiful.
This year has been a year filled with challenges and blessings, and we have much to be thankful for. We have always tried to express our thanks on this website, in fact it is really the reason we continue to update. We want everyone to know how much we appreciate all of your love and support, and how much you have helped our family make lasting memories. We know many of you have also experinced trials of your own, and we pray for you as well.
Some things we wanted to say about friends and family. Jodie was just expressing to me the other day how much she wishes she had more time to spend with her friends. How there are so many ladies in this world that she counts as very best friends, and how guilty she sometimes feels for not being able to send notes or call to everyone she thinks of. There have been many times she has said "I need to call her because____ or I want to do ____ for her, but she simply runs out of time and energy. Please know how much she loves and appreciates you (there are so many we could never list them all). Jodie is torn between wanting to do things like photo albums, and other projects, spending time with her friends, all while trying to enjoy every minute as a mother by doing the things she loves to do as a mother (making meals, grocery shopping, keeping up with the house.) Yet through it all, she wants to serve people, to spend time with them, to let them know how much she cares about them. So I wanted to tell you all how important you are to her.
We wish you all the very best Thanksgiving!
The Clarks.
Sunday, November 13, 2005 0:42 AM CST Jodie asked me to update this since she has been so busy. She came home and continued to be involved with everything she can get her hands on. She has been busy with the kid’s school, running from here to there. She does not talk about her health much but I wanted you all to know she is still doing great. She has a tough time in the morning when she first wakes up, and then a little in the evening but all her medicine has really allowed her a great quality of life. She is so busy and so happy that it is so easy to forget what she has gone through. We have not forgotten, and count each day as a miracle that she can do what she is doing. She is still living off the high of the Disney cruise and her trip to California. So many people have expressed their excitement for Jodie being on the Price Is Right. I have to tell a funny story. Jodie told our dentist and his hygienist about being on the PIR and they were so excited and asked what date and time. She told them December 12, CBS @10:00AM. Well I recently referred a coworker (ELIZA) to our Dentist. She told me she was laying in the chair, with her mouth full of hands and drills, and looked over and saw a sticky note on the cabinet door of the exam room that read "December 12, CBS, @ 10:00AM. Eliza tried to say JOOODIIIE? But they could not under stand her. Finally, when she had the opportunity, she asked if that was Jodie? The story does not end there. Eliza told me about the incident and we had a good laugh. Well a few days later I was lying in the chair with my mouth full of hands and a drill and I looked over and saw the infamous sticky note! I also tried to say OHHH JOODDIE? They said yes it was and proceeded to tell me about some girl named Eliza and how she said she worked with Jodie's husband, I think it took them a second to put it all together but it was just another fun example of the small world of cancer and how much people love Jodie and what she has gone through.
My parents were here for a whiz bang visit. They arrived on Thursday night, and spent Friday going to Emmy's school for lunch, and Katie's preschool for a visit. On Saturday they took the kids to H20asis ( a fun indoor water park) and then on Sunday before they went home they were able to be here for Tanner's 12th birthday. Grandpa gave his backpack to Tanner and Hayden. Tanner's 12th birthday is a momentous occasion for in our faith. This is yet another miracle in our family that Jodie could be here for that day. It was something that was very important to her, and we hoped she would be here for. Like many other things, it is another tender mercy from the lord. It was wonderful to have them here, Colorado is a long ways away from Alaska, and they managed to travel all day coming, and all night going home, and the kids were so glad they did.
This weekend our family went to the opening of ZATHURA an exciting yet/scary movie for kids. We all had fun and each tried to pretend like we were not a little scared. But we all agreed that we enjoyed being a little spooked, even Katie! Great movie! Go and see it if you dare!
The last thing I wanted to report on was Tanner's BSA swim test today. I took him to a high school pool so Tanner could get the last requirement done for his 1st Class rank in Boy Scouts. I was worried he would not be able to swim the 100 yards as required as he is not the strongest swimmer, but he stuck with it and pushed his way through. I was so proud of him, and wanted him to be able to come home and tell Jodie about it. He beamed as he told her! It was a nice moment to watch. Hayden also managed to impress, he learned to dive off the 1 meter diving board, and was doing flips by the end. I had a little scare when he tried a back flip and managed to land his arms and head on the board as he rotated around. He was not hurt, so I haven’t told Jodie. SHHHHH, it is our secret!
Sunday, November 13, 2005 0:42 AM CST Jodie asked me to update this since she has been so busy. She came home and continued to be involved with everything she can get her hands on. She has been busy with the kid’s school, running from here to there. She does not talk about her health much but I wanted you all to know she is still doing great. She has a tough time in the morning when she first wakes up, and then a little in the evening but all her medicine has really allowed her a great quality of life. She is so busy and so happy that it is so easy to forget what she has gone through. We have not forgotten, and count each day as a miracle that she can do what she is doing. She is still living off the high of the Disney cruise and her trip to California. So many people have expressed their excitement for Jodie being on the Price Is Right. I have to tell a funny story. Jodie told our dentist and his hygienist about being on the PIR and they were so excited and asked what date and time. She told them December 12, CBS @10:00AM. Well I recently referred a coworker (ELIZA) to our Dentist. She told me she was laying in the chair, with her mouth full of hands and drills, and looked over and saw a sticky note on the cabinet door of the exam room that read "December 12, CBS, @ 10:00AM. Eliza tried to say JOOODIIIE? But they could not under stand her. Finally, when she had the opportunity, she asked if that was Jodie? The story does not end there. Eliza told me about the incident and we had a good laugh. Well a few days later I was lying in the chair with my mouth full of hands and a drill and I looked over and saw the infamous sticky note! I also tried to say OHHH JOODDIE? They said yes it was and proceeded to tell me about some girl named Eliza and how she said she worked with Jodie's husband, I think it took them a second to put it all together but it was just another fun example of the small world of cancer and how much people love Jodie and what she has gone through.
My parents were here for a whiz bang visit. They arrived on Thursday night, and spent Friday going to Emmy's school for lunch, and Katie's preschool for a visit. On Saturday they took the kids to H20asis ( a fun indoor water park) and then on Sunday they were able to be here for Tanner's 12th birthday. That is a momentous occasion for Tanner in our faith. This is yet another miracle in our hearts that Jodie could be here for that day. It was something that was very important to her, and we were not sure if she would be here for back in June. Certainly not doing as well as she is. Like many other things, it is another tender mercy from the lord.
This weekend our family went to the opening of ZATHURA an exciting yet/scary movie for kids. We all had fun and each tried to pretend like we were not a little scared. But we all agreed that we enjoyed being a little spooked, even Katie!
The last thing I wanted to report on was Tanner's BSA swim test today. I took him to a high school pool so Tanner could get the last requirement done for his 1st Class rank in Boy Scouts. I was worried he would not be able to swim the 100 yards as required as he is not the strongest swimmer, but he stuck with it and pushed his way through. I was so proud of him, and wanted him to be able to come home and tell Jodie about it. He beamed as he told her! It was a nice moment to watch. Hayden also managed to impress, he learned to dive off the 1 meter diving board, and was doing flips by the end. I had a little scare when he tried a back flip and managed to land his arms and head on the board as he rotated around. He was not hurt, so I haven’t told Jodie. SHHHHH, it is our secret!
Wednesday, November 2, 2005 11:43 AM CST Happy November! I am home now. When we arrived at the airport en route to Anchorage from San Jose, Kim and I found out that our flight had been cancelled and that we did not have many choices. In the end, we flew to Seattle, and checked into a hotel (courtesy of Alaska Airlines) at midnight and had to be back at the airport at 4:30 a.m. for a flight to Anchorage leaving at 6:00 a.m. We arrived back in Anchorage at 9:00 a.m. and were able to be home for Halloween. Kim, however, was not able to enjoy much of Halloween, even after all our efforts to get home quickly. Her little girl, Jenna, got the stomach flu and was not able to go trick-or-treating. =( BUT she was very glad that Jenna’s sickness didn’t rear it’s ugly head until she was able to be home and take care of her! Tender mercies.
I had a wonderful Halloween. The kids were all excited about their costumes-—Tanner was a Wanderer; Hayden was Dracula; Emmy was a purple unicorn; and Katie was a witch. (I think that anything can be a costume with a little face painting. That is always the best part!) They had "trunk-or-treated" on Saturday night and the girls had worn different costumes. Matt wore his Pirate Bandana with Goofy ears that we brought home from the cruise, and I put on a silly joker hat and wore my orange Old Navy Halloween shirt. I have always loved Halloween because of the costumes and cute little kids and the excitement of it all. I am always sad that I can’t go with my kids trick-or-treating AND hand out candy.
I was a little sad to be home from the great time I was able to share with Kim, Holly, Julie, and Debbie. It is always hard knowing times like we shared have to end. On her way home, Debbie wrote about our friendship and our trip, and I thought it was so powerful and profound that I wanted to share it with all of you. I asked her if I could share it with everyone on the website. She is very aware and insightful when it comes to feelings and can put feelings into words so well. I questioned if it would be appropriate to share these feelings with everyone because they are so special, but Debbie said that what we have is so special that we should share it with others. Once again, very insightful! I don’t know if it will touch you as deeply as it did me, but my love for each of these wonderful, heaven-sent friends and all the other friends in my life grows every time I read it, and I don’t think anything I could compose could tell about our trip and our friendships any better than Debbie’s words.
The Girlfriend Get Together
by Debbie McArthur
Five Women.
Five Mothers.
Five lives touched by each other.
The place – Julies.
Oakdale, California.
October 28–30, 2005.
Julie Price, Jodie Clark, Kim Lowry, Holly Kerr and Debbie McArthur.
How did we meet?
It seems we’ve always known each other.
A special place.
Anchorage, Alaska
Magical, beautiful, a place to bond, a place to grow, a place where we needed one another, a place where friendship and love became firmly rooted in our hearts.
We all had fun together.
Church
School
Babysitting Coop
Parties – mostly planned by Jodie
Lunches
Painting
Decorating
Going to the park
Snow
Quilting
Reading
Birthdays and
Births
So much began to happen to all of us in Alaska.
We worked together and we played together.
Our children adored each other and we became sisters and our husbands friends.
Then heartache crept in.
Jodie was sick.
We didn’t know just how sick.
Surely nothing could be that wrong.
Surely this would be just a small trial to get through.
What a tumor?
It’s benign – we all know it’s benign.
The surgery is going to be rough but then all will be well and we’ll all go on.
What Cancer?
No not Jodie.
She’s too young.
She’s a mom.
Her children need her.
Matt needs her.
Get the cancer out – all of it!
Get Jodie better – everything’s going to be alright.
Isn’t it?
So much chemo.
A bone marrow transplant.
Wow! So drastic.
So invasive.
How can she stand it?
How can Matt?
We all try to do what we can.
Nothing is enough.
Love Jodie.
Love the children.
Feed them.
Nurture them.
Tell them everything’s going to be all right.
It will, right?
What a year.
In the midst of it all, life for all our families moves on.
Julie moves to California.
Holly to Utah.
Debbie to Hawaii.
Thankfully Kim stays with Jodie.
Not only sisters-in-law but best friends.
Everyone is relieved that Jodie has Kim.
Kim is so strong.
Jodie is stronger than all of us.
She smiles through it all and we all cry together.
Smiles and tears all mixed up.
We’re all grateful for her web page.
We stay informed and encouraged by her zest for life and her power for good.
All of us are changed.
Life takes on a new dimension.
Suddenly we see time differently.
Do we all have long together?
We begin to contemplate eternity.
Friends FOREVER.
But let’s make the most out of what we have here.
So we have a girlfriend get together.
Jodie, Kim and Holly go to L.A.
The Price is Right.
Jodie, of course, is called up.
She wins a bedroom set and a bike.
They all act like they’re 15.
No one sleeps – let’s just be together.
Friday morning Debbie arrives.
Julie picks her up.
We all get together at Julie’s childhood home in Fremont, California.
Everyone stays in their pajamas.
Debbie is exhausted from an all-night flight.
So we all just sit together being tired.
Just savoring the moment.
Feeling each others hearts knitting back together from our long separation.
Are we really together?
It’s as if we’ve never left.
Haven’t we always been together?
Haven’t we always known each other?
Haven’t we always called each other friend?
Won’t we always!
We all take naps.
Then showers.
Dinner at a Mexican restaurant.
The waiter is rude.
Doesn’t he realize who he is serving.
Jodie and Kim gave us all bracelets with charms of hearts and a queen.
We are queens.
We should be treated as such.
Can’t everyone see how wonderful and regal these women are?
We should wear crowns.
We should have a red carpet laid before us.
Oh how good it feels to be together.
Kim cracks us up.
The mocha girl.
Our accommodations are heavenly.
Does heaven feel like a grandmother’s house?
It’s comforting, welcoming and full of love.
Very late we decide to sleep.
Jodie and Kim together, Julie alone on a couch bed and Debbie and Holly together.
We’re both afraid of kicking each other in our sleep.
Holly tries to sleep while Debbie chats.
Shhhhhhhh!
Wow we all slept so good.
Saturday.
Time out for Women.
Sheri Dew and crew.
Profound, moving, spiritually uplifting and motivating.
We are all determined to do better, be better.
Then off to Julie’s home 100 miles away.
Chatter, chatter, chatter.
We talk of everything and nothing.
It’s just good to be together.
We arrive at the Price Palace.
Everything is as it should be.
Beautiful clean home filled with talented and charming children.
A great meal with great people.
Newlyweds Lyndsay and Matt come to say hello.
She has changed.
Marriage is good for her.
So happy, so sure of herself.
Oh is Halloween around the corner.
The kids come home with funny teeth and bags of candy.
They are delightful.
Puppies. Who wants one? We all do.
We stay up til 2 or 3 a.m.
Drinking hot cocoa and wishing the time would never end.
No one can keep their eyes open and we reluctantly go to bed.
Sunday morning.
Breakfast and more hot cocoa crowded around in the Price kitchen nook.
Chatter, chatter, chatter.
Laugh, laugh, laugh.
Church isn’t til one so we break off to enjoy each other in small groups.
Debbie goes to Paige and Annie’s room to listen to a CD by Jon Schmidt, music that she has been playing on the piano all morning.
She is beautiful – Annie crawls up in her lap for a sweet sisterly cuddle and Paige patiently obliges.
The love in this home is palpable.
We talk of Alaska – how great it was there.
The perfect timing of it all that brought us all together.
How our families all needed the Alaskan experience and got it at just the perfect stages of our lives.
How we needed the close friendships that the Alaskan experience provided.
I tell her I want my son to write her.
I’d love to have a son or daughter-in law to be a Price.
Can we arrange marriages?
We all go to church together.
The opening song is, “I Know That My Redeemer Lives.”
I can’t help thinking that because of Him we can return to our Heavenly Home where death and disease will no longer have power over us and where these five women can be reunited as friends and sisters.
Jodie sheds a few tears.
Is she thinking the same things as I am?
I reach around me.
Kim, Holly, Me, Jodie and Julie.
We’re all on a pew together enjoying the spirit of the gospel of Jesus Christ that brought us all together in the first place.
We are home.
Of course Holly breaks the ice by observing the flirtations of Scott and a Young Woman who is on the stand to sing later.
She sends a note.
$5 bucks if you blow her a kiss.
Scott is rarely afraid.
Will he do it?
You bet he will, but not without a few bouts of flushed cheeks and sweaty palms.
Oh my goodness he did it!
It was a good one too.
Do you think the Bishop saw him?
He was in his line of vision.
The speaker is a good one and very profound but I can’t stop laughing.
Scott, you are adorable.
Would that there were many Scott Prices around.
The world would be such a fun place.
Alas, the time has come to go to the airport.
We bid farewell to the Price clan.
Gary gratefully comments on his friendship with all our husbands and the bonds between us all are strengthened.
Then we’re off.
Of course with five women we get to the airport without a minute to spare.
We kiss and hug and cry.
Back to our lives that will be touched forever.
Back to our lives that will never be the same.
THANK YOU, KIM; HOLLY; JULIE & DEBBIE FOR TOUCHING MY LIFE FOREVER. I CHERISH OUR "ETERNAL" FRIENDSHIP.
Jodie
Friday, October 28, 2005 12:08 AM CDT Greetings from California! Kim, Holly Kerr, and I arrived last night in San Jose where we were met by Julie Price and are now staying at Julie's mother's home for the weekend and awating Debbie McArthur's arrival. We are excited to have a "down" day before our women's conference tomorrow. We have had A LOT of excitement since the beginning of our girl's vacation.
We left Anchorage on Wednesday morning at 1:30 a.m. and flew to Seattle were we ran from that flight to our next flight and barely made it. Then we continued on to Los Angeles. Because of our time crunch, we were unable to eat during our travels, and because we were so excited about our adventure, we talked non-stop during our first flight and only slept for two hours on our second flight. Needless to say we arrived in Los Angeles tired and hungry yet caring about little else except getting to the Dr. Phil show. As quickly as possible, we freshened up; got our baggage; jumped on a shuttle; got our rental car; and bravely battled the LA traffic with Kim at the wheel and me navigating. When we arrived at the Dr. Phil show (without ever getting lost!) we were tired and hungry, but our adrenalin was pumping and we didn't seem to notice. We stood in line with only about 50 people ahead of us and were very much excited and assured that we would get in. We couldn't believe it and would jump up and down every once in awhile at the thought that we were going to be in the audience of the Dr. Phil Show. Well, when the audience from the first taping (there are two tapings each day) came spilling out of the exit and proceeded to get in line AGAIN, I thought, "How rude that they would not let someone who has not had the chance to see the show have that opportunity." and, anyway, there is a rule that you are only allowed to attend one taping ever four weeks, SO it was unbelievable to me that these people thought they were going to get in again. WELL, as we stood there, the Dr. Phil employees started calling for this tour group and that tour group and then, in the end, only a very few of the people who had been standing in the front of the line got in. It was unbelievable!! Everyone was very upset and the representatives from the Dr. Phil show said that we could come back in the morning to a taping, but we, of course, couldn't do that because we were going to the Price is Right. They said that they had asked these tour groups to fill their audience and that is why they took them before us and that this had never happened before. Isn't that ironic that it happened on the day we came? Maybe we weren't SUPPOSED to get in. Still, I was very upset, because they had called me the day before to confirm my attendance at the show, so why couldn't they have said that there were only a few seats available or asked one of the tour groups to only attend ONE of the tapings. Kim and I were very frustrated for the rest of the day, knowing that there would never be another chance for us to get back to LA and how much we had done to get there and how excited we were to see the show. I might have to let the Dr. Phil show know of my experience! :)
After checking in to our hotel and eating, we drove BACk to the airport to pick up Holly. We did a HUGE amount of driving--or I guess I should say KIM did a huge amount of driving--and it was a great adventure. Kim drove like a pro! We were all nervous about driving in L.A., but she got behind that wheel and by the end of our two-day stay, she could have out-driven any taxi driver in L.A.
The next day was our day to attend The Price is Right! Because of our previous Dr. Phil experience I was very nervous, and a little negative, about getting in to the Price is Right. We had a huge adventure just finding out that we were number 12, 13, and 14 on the stand-by list and would have to come back at 11:30 a.m. to see if we got in. We had made our fun Price is Right shirts before we left Anchorage. They said on the front, "We left our igloos in Alaska..." and on the back, "to win our friend an Ice Box!" One of our friends, Jenni Western, had planned to go with us but had a family wedding and was unable to come. Well, her fridge is broken, and we told her that if any of us won a fridge we would give it to her. That was the reason for our shirts, and it was so fun to wear them and then put on the famous Price is Right name tag.
WELL, when we came back, we found out we were in! There was a short interview process, if you can call it "interview," and after everyone had been through it, we were "herded" into the studio. The studio really blew me away--not because it was grand but because it was so "rinky dink." I don't know how they make the show look like they do. It was very small and everything was built with wood and looked like something you would see at a church party. I really don't understand how they make it look so "high tech!" When the show started the announcer came out and got us all excited and screaming and yelling. It was unreal how much energy and excitement were in that room! As the show started, they called down the first four contestants and had to show their names on big white cards because it was so loud you couldn't hear what the announcer was saying. I was anxious to see if any of our names would come up on the cards, but they did not and we didn't care because it was so much fun just to watch everyone! Well I thought they were going to show names on cards each time, so I was unprepared when the announcer said "Jodie Clark, Come On Down!!" YES! I am not KIDDING! I WAS ON THE PRICE IT RIGHT." After two unsuccessful bids in contestant's row, I bid on a three-wheel, two-seater bike and won my way on stage! When I got up there, I played "Hi, Low" and won a bedroom set! I COULD NOT believe it. I didn't make it to the showcase showdown because I spun .75 cents and the lady after me spun .80 cents. I really could not beileve it. Anyway, long story short, watch on December 12th and you will see me on the Price is Right!
I need to go now to spend time with my friends! Debbie McArthur just arrived from Hawaii and so now, we are all together. I will update more when I get home! I am having the time of my life with these other wonderful women. I am so glad I am here and healthy enough to enjoy them and this wonderful time together.
Jodie
Monday, October 24, 2005 3:53 AM CDT
Hello, everyone! It is getting harder and harder to find time to keep our website updated. I seem to forget how much work it takes to keep a household with four busy children running. Our days are, once again, filled with running kids to and from school and all their extra curricular activities and finding time for homework, family home evening, daily scripture study and family prayer, making meals, grocery shopping, keeping up on the laundry, cleaning the house...and still I would be a little embarrassed if you came over and had to use my bathroom because I can't remember the last time I gave it a good scouring! Most of the time I am not sure how I will be able to get everything done, so I jump in, with faith, hoping that I will not drown! =) By the end of each day, I feel tired, a good tired, and happy and grateful that I was able to make it through. I have an awful habit of being late everywhere I go and going a little too fast to get there because I am late. I have been trying to plan to leave a few minutes earlier than I think I will need (that usually gets me there on time) and obey the speed limit. I am amazed at how hard that is for me! I guess speeding kind of goes along with the loud music that I like. =) I don't know what that says about me; maybe I shouldn't be sharing that with everyone?!
The kids have been busy keeping up at school and sometimes I miss the carefree days of this summer when we were able to spend so much time together. I enjoy the weekends, especially Sunday, when we can be together as a family, but I never feel like I have enough time to spend with them even on the weekends. I am looking forward to Thanksgiving and Christmas breaks!
The kids are excited about Halloween and each have a costume they are anxious to wear. I am leaving on Tuesday to fly down with Kim to California where we are meeting up with three of our girlfriends to have some girl's time. Kim and I are planning to attend the Dr. Phil show on Wednesday, and then Holly Kerr will meet us in Los Angeles where we are planning to see if we can "Come on down!" at the Price is Right! We have had this planned for so long that I can't believe it is finally here! After the Price is Right, we are flying to San Jose where we will meet up with our other friends, Julie Price and Debbie McArthur, for a church women's conference. I am so excited to see all them again!! They each moved from Alaska (Julie to San Jose; Debbie to Hawaii; and Holly to Utah) after my bone marrow transplant and within six months of each other. When we all lived in Anchorage, we would get together quite often for lunch or dinner or movies or whatever excuse we could come up with. Needless to say, they have left holes in the hearts of many people here in Anchorage. It hasn't been the same without them. I plan to take lots of pictures, so I can share all our adventures with you. We are a little scared we might get lost and never be able to find our way home, but what the heck!
Ugggh! At 1:00 in the morning I would have thought I wouldn't be interupted while posting this update, but I was taken away from my composing for awhile because Tanner woke up with the stomach flu and didn't make it to the bathroom. It was one of those times that you DON't want to be the Mom. Luckily I had a lot of help from Matt. It was an awful mess to clean up but not so awful when someone else is going through it with you. I was a littled stressed because I kept thinking about my upcoming trip and what a disaster that would be if I had the stomach flu and what a terrible thing to leave Matt with other sick kids if Hayden or Emmy get it. Katie already had it last week. Matt actually took care of her all through the night, so I guess I shouldn't worry that he couldn't handle another vomitty mess (is that a word?)! But I hope I don't get it before my upcoming trip!
It is almost 2:30 a.m. now, so I better get to bed, but I wanted to let all of you, my friends and family, know that I am having a hard time keeping up and current with all my phone calls. One of the hard things about cancer is that it comes with all the other trials, hardships and problems of life. When you get cancer, your money problems don't go away; your marriage still has its ups and downs; your children don't magically become perfect; and you don't instantly have all the answers to life. So it just adds to the already huge load of just living. I promise you all that my love and gratefulness for you is never waivering and my thoughts are never far from all the wonderful people that I have been blessed to know, but there just is not enough time in the day for all that I have to do and sometimes phone calls have to fall to the bottom of the list. E-mails are better because sometimes I can find time to reply during the wee hours of the morning. Thank you for understanding and knowing that it does not make you any less important to me. The one thing that cancer has done for me is make me appreciate all the wonderful people there are in the world and how God knows the plan for each of our lives and is preparing things years in advance so that when we hit the "bump in the road," He can bless us with so much more than we would ever expect. And many times it has been through people like each of you that He has been able to bless our family; your hands have been His hands. Thank you.
Jodie
Wednesday, October 12, 2005 11:18 AM CDT Our life has been rather boring as of late and there isn't much to say...which is really, REALLY a good thing. We are just getting through each day like the rest of the world. What a blessing it is that I can say that; right?! Living normal is definitely a dream come true for me.
We have had some ups and downs over the last two weeks, but we are on an up right now and hopefully will stay that way for awhile. Matt is off to St. Paul Island (a small island in the Bering Sea; that is more than I want to know!) and it sounds as though he is bored stiff. Not much to do and a long time to wait for their scheduled flight out. Everyone misses him around here and is looking forward to his return. He adds a lot of life to our "party" and things seem a lot different when he is gone.
But we, unlike him, have a lot to do and not a lot of time to do it. I decided I wanted to make princess dresses for the girls for Halloween. There was a great sale at JoAnn's on costume fabric so I thought why not add another thing to my growing list! I might be taking on way, way more than I can handle with this task. I am not a seamstress but have dabbled a little with Halloween costumes and super-hero capes. I just keep reminding myself that it is just for dress up and so if I mess up it is not a big deal; the girls will still think it is pretty cool (does that word date me?) even if I sew it inside out and backwards.
The kids all love their teachers this year which makes life so much better at home. Hayden is struggling a little to catch up on the things he missed out on during our cruise, but he is almost there and has been working really hard (with lots of encouragement from Mom and Dad). Katie is still loving her preschool and waiting patiently for her 5th birthday. It will be here in a short nine days. Tanner's 12th birthday comes quickly after that on November 4th. For those of you who attend our church, you know that this is a special birthday for him and us. I can't believe how fast time has gone. I was just at Kim's house last night (my sister-in-law) and in Alek's room (Tanner and Alek were born 9 days apart) there was a picture of Tanner and Alek on their second Halloween. Tanner was a football player and Alek was a clown. It really made me realize how much time has passed since they stood there for that picture! We love Tanner so much and are so proud of the person that he is becoming, and I am ever grateful for each new day that I get to enjoy his blossoming personality.
Sorry for lapse in journal entries. We will try to do better from now on! :) Thanks for all your prayers, love, and concern. We know that your prayers are the reason we are able to enjoy this time so much!
Jodie
Friday, September 30, 2005 1:19 AM CDT Hello Everyone!
We have had an extemely busy week trying to get back into our routines. The kids have had MAJOR homework to make-up and have been spending most of their spare time trying to get caught up. We are seeing a light at the end of the tunnel--finally.
Katie started preschool this week and has talked of little else all week. I get to go and help out in her class tomorrow and that means it will be her "special day." She is sooo excited, and I am too.
I have been working on putting some of our vacation pictures on the internet. The link is down below for those of you who are interested. I only have a few uploaded right now but will keep updating as I work with our most recent pictures. I have been spending most of my spare moments on organizing and improving (love digital) our photos from the cruise but have been so busy that I have had little spare time.
Matt is as busy at work as the kids are in school. It has been a little hard to go from 10 days being together every day to having to find time to be together, but hopefully everything will slow down once everyone is caught up.
We will update again soon, and, as always, we love to hear from you. I have received a few e-mails lately from people I don't even know. (One of those somebodies encouraged me to put the pictures on the internet. Thanks for that idea.) I know I have said this before, but I just wish everyone had a website so we could get to know each of you as you have our family. Your words of encouragement; your thoughtfulness and concern; your empathy have all blessed our family. As always, we thank you for your prayers and continue to feel them in our lives in so many ways.
Jodie
Thursday, September 22, 2005 5:12 PM CDT SHORT Friday Morning UPDATE =)
Last night Hayden said the prayer before dinner. During the prayer he said how grateful we were for all the people who have helped us and then asked that they be blessed with "as good a life as we have." It really touched my heart, and I wanted to share it with all of you who have helped us in so many different ways to achieve such a "good life," even during such trying times! We truly do pray that you will be blessed as we have.
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Well, we are back home. It seems in the past when I have said that it is with excitement and exclamation marks because we had been away from the kids and finally were able to see them again. What a drastic difference this trip has been compared to all of our other flights and homecomings in the last two years!! From the last day of the cruise until we were flying home, I always had that little bit of sadness in the back of my mind knowing that this wonderful once-in-a-lifetime experience would have to end. Now that we have come home, it is back to all the realities of every day. Last night we watched the DVD of our dolphin experience and looked at all of our 800, give or take a little, pictures laughing about each one and the memories that it held—from our early morning departure from Anchorage to the time a bird pooped right on top of Katie’s head in Key West to the pictures of Tanner and Hayden screaming, “We’re gonna die!!” as they were carried upward during their parasailing experience to the picture of the poor lady who wasn’t too happy to sit in front of our kids on the airplane. I guess we didn’t want our vacation to end and to be back to the reality of work, school, and cancer.
I should fill you in on our last night of the cruise and the rest of our time in Orlando. Friday, as Matt said, we spent the day at Castaway Cay parasailing, snorkeling and fishing. Katie was so cute when she first saw the beach at Castaway Cay she exclaimed, “I’ve always dreamed of a beach like this!” It truly WAS a beautiful beach. It was more like a real island with palm trees and a white sand beach that never seemed to end. Even the stores and rental areas were made to look like island huts. All the beaches we had been to were beautiful, but this one was special and I found it so interesting that Katie would notice such a thing. While Matt and Hayden were fishing, the girls got their hair braided (just two braids in the front) and Tanner went and did some activities with the kids his age. After playing in the ocean for a short time, Katie and Emmy and I returned to the ship so we could meet up with Tanner at a 3:30 showing of the new Disney movie, “Valiant.” As we were boarding, the girls got a picture with Terk from “Tarzan” and Captain Hook & Mr. Smee. Katie had been telling me she had to go to the bathroom since we left the beach, and I kept asking her to hold it until we were back on board the ship. We were going to go straight to the movie in our swim “attire”, so I thought we could get our seats and take Katie to the bathroom. Well, as we were getting our seats, Katie said she had to go “REALLY bad,” so I asked Emmy to take her and I would be in in a minute. I quickly put down our swim towels, saved us good seats, and then ran to the bathroom. Well, I found every mother’s nightmare—Katie had had an accident in her bathing suit and it seemed to be oozing from every nook and cranny of her bathing suit. I just stood there in disbelief wondering how I was going to take care of this mess! I had nothing with me to clean up such a huge mess. Then I remembered the towels. When I had entered the ship there was a large basket in which you could drop your dirty beach towels, but I had somehow walked right by it after thinking only minutes before how glad I was to be able to drop off the towels! What a blessing that turned out to be! I went back into the theatre, grabbed the three towels and used them to clean up Katie the best I could. I took her swimming suit and the three towels and through them directly in the trash; then went up to our room and gave her a shower. We decided to run back down to the movie even though we were 20 minutes late. I couldn’t believe we made it at all. “Valiant” is a movie about the pigeons from WWII that carried top secret messages to and from allied forces. I never knew, but some animals actually received medals for their service during war time! I think it said something like 32 pigeons that were awarded medals. Anyway, it was a very clever way to show the pigeon’s “point-of-view.” It reminded me a bit of “Mulan” in the way that it stirred my emotions. Maybe that was just from the stress of my own recent “war story”—Battle at the Disney Bathroom! I could have used a trusty helmet; good strong pair of gloves and a gas mask, but I did it single-handed without armor!
Anyway, that night we went to another amazing show. It was a conglomeration of all the previous shows on the ship and once again it was brilliant. We laughed and even cried as we watched the performance. After the show, we had our last dinner on the ship and then packed up. We had to have our luggage in the hall by 11:00 p.m. and then the next morning, it was already off the ship and waiting for us. We had breakfast and said goodbye to our wonderful waiters, Stoyan and Beethoven. Stoyan was from Bulgaria and Beethoven from the Philippines. All the members of the “cast” (that is what Disney calls the people that work for them) wore name tags with their country of residence listed below their name. Seeing a tag that said U.S.A. on it was very rare. It was really neat to hear all the accents and to realize what a wonderful opportunity it is must be for some of them to be employed by Disney. I don’t think we ever ran across anyone that was not extremely friendly, kind, and helpful. The ship was amazingly clean and ran like a well-oiled machine. We enjoyed every moment we were aboard and felt so sad as we walked off the ship and back into reality. We were very glad to be able to stay in Orlando for a few more days and that thought helped to lessen the sadness.
We stayed in a hotel on Saturday and then on Sunday we moved into the condo that we stayed in Orlando. It was actually two condos with an adjoining door. The boys stayed in the smaller apartment and thought they were so cool to have their “own” place. I shudder to think what their first apartments will be like. If this experience is a precursor, I am thinking clean would not be an adjective to describe their bachelor pads. They liked to eat in their “own” kitchen and watch their “own” t.v. It was fun to watch them enjoy their independence. The other apartment was huge! It was a two bedroom and two baths. The girls had their own room and had fun playing in it just like the boys. There was also a swimming pool, playground, and miniature golf at the complex. Sunday we went to church, started doing some laundry, and took a day off from running around.
Monday we went to Magic Kingdom and Tuesday to the new Animal Kingdom. The kids and Matt and I had fun riding the rides all day. I was pretty tired when we got home on both days, and so Matt took the kids to the pool and miniature golfing while I took naps. The kids really enjoyed both parks and we were really lucky to be able to wait not more than 20 minutes at each ride. Hayden actually rode Space Mountain three times in a row because the line was so short. At Magic Kingdom, we were able to get a lot of rides in as a family in the morning and the girls split from the boys and rode different rides in the afternoon. We all stayed together on Tuesday at the Animal Kingdom. We went on an African Safari and a river rafting trip at that park, and once again the lines were short and we were able to squeeze a lot into one day. We actually got caught in a heavy downpour in the middle of the park, but we enjoyed the coolness that having wet clothes can bring and got wet again on the river rafting experience anyway. We have lots of pictures and tried to take a picture of each ride that we rode so we could remember each one.
Our flight home was good and uneventful. Miss Julie and Miss Sarah had made goody bags for the kids on the way down to Florida filled with lots of fun things to do on the plane, and they were excited to have some time to be able to play with all their fun “goodies” again.
I am surprised how thankful and grateful the kids have been on this trip. They really understood that this was a special thing that we would not have been able to do if it had not been for other people’s kindness. They are usually very thankful for things that other people do for them, but are a little less grateful for the things mom and dad do, so it is nice to have these opportunities to see how thankful they can be and were for each thing that we were able to do. There were many “things” that they could have wanted on the ship, i.e. Princess dresses, stuffed animals, t-shirts, jewelry, swords, etc. Many of the kids on the ship were wearing the dresses and carrying around the stuffed animals, but when I told them that WalMart would be a much cheaper place for souvenirs and that they need to remember to just be thankful that we were able to be there, they all readily agreed and decided that WalMart would be a much better place to get some souvenirs.
Now we are home and back to the old grind. I kept all the kids home from school today to adjust to the jet lag a little and catch up on homework. I am so glad I did, because they are all having a difficult day or maybe it is me who is having the difficulty! =) Whichever it is, tomorrow will bring a welcome start to our family routine, but the memories of this wonderful family vacation will live on forever in our hearts and in our pictures.
Thanks again everyone who made it possible for us to enjoy this wonderful family time together.
Jodie
Friday, September 16, 2005 4:00 PM CDT The Bahamas where amazing! We had a day at sea yesterday coming from Cozumel to Castaway Key (An island in the Bahamas leased by Disney). Yesterday the boys and I played shuffle board. The grand prize was either an ice cream served to me by the boys, or a $10 arcade card. Yes, I enjoyed a nice ice cream by the pool but they gave me a good game. It was wonderful fun.
The rest of the day we swam a little, had wonderful meals including lobster for dinner, and ran from one activity to another. One amazing activity was a Disney play in the most amazing theatre (hard to believe it was on board a ship). I forgot the title of the play but it was a medly of all the disney hits. Jodie, the kids and I all loved it.
Today we arrived in the Bahamas, and Tanner and Hayden and I went parasailing. IT was one of the neatest things i have ever done. Hayden left the boat with Tanner attached to the parachute screaming were going to die (really trying to ham it up) but landed screaming let's do it again! I sat in silence up there and just enjoyed an amazing view from about 400' up and 900' above the boat. I think even someone afraid of heights would love that if they could just get over the first 10' leaving the boat. It was inspiring.
Jodie and the Kids and I tried our hand at snorkeling which was not the easiest thing we have done. Emmy and Katie did not enjoy it which made it difficult for Jodie and I. At least we tried it and we took some fun pictures.
Hayden and I did a little fishing on a charter about 5 miles from the ship. We caught grouper (which are really just rockfish in Alaska) but it was fun. Plenty of action, and we even hooked into a few sharks as we were bringing up our little rockfish. That fun would last about 30 seconds before they snapped the line.
We are back underway for our last night at sea. I know we will be so sad to leave this ship as it has been everything and more than we expected. It was just an amazing week. We see why so many families come back year after year.
I know that Jodie will want to add more to this message, but we will be staying in Orlando a few more days to see some of the Disney parks on Monday and Tuesday.
WE have lots of fun pictures to share but no way to post them as of yet. I think Jodie has done a wonderful job of thanking everyone, but i am confident words can not express our thanks. For now, we leave you knowing we have smiles on our faces, with sunburns to match! More later.
Wednesday, September 14, 2005 7:39 PM CDT HOLA FROM COZUMEL!!! We have had a wonderful two days. Yesterday we had a fantastic day in the Grand Caymen, but ALOE VERA is our new friend. We were picked up by a tour company and driven to the most amazing beach, and we played and snorkeled in the water for 4 hours, but it was 95 with 90% humidity and strong sunshine, so despite our efforts with sunscreen, we are all a little crispy. We had a wonderful time, and sailed all night to Cozumel Mexico.
We arrived this morning at 10:00, and took an excursion to a wonderful version of Sea World, where we were taken to an enclosure of the sea, and allowed to be in the water with Dolphins. ALL OF US WERE MEZMORIZED by their gracefullnes and how tame they were. We all got to get and give kisses to a special friend (marine mammal kind), The girls were just amazed as they got to pet the dolphin, and give and get kisses from it. We also each got to feed it a small herring (YES, THE SAME EXACT SIZE YOU CATCH SILVER's WITH) after it gave us a kiss. It was just fantastic. We paid the extra money to have a DVD made of our experience (they filmed) because it was so professionally done and it was so fun. We plan to bore you all with it when we return!!
The kids and I returned to the ship (except Jodie and Hayden) and enjoyed a little time in the pool, some lunch/dinner by the pool, and just had fun. When I took the girls back for a shower, Emmy was using the potty and I could here her crying, she said "I CANT WIPE DADDY, MY ARMS WONT REACH CAUSE OF MY SUNBURN!" So needless to say, we are getting plenty of sun. When we walk around town we are litterly melting (people understand when we tell them we are from Alaska).
Tonight is PIRATE night on the ship, so we are enjoying a special meal and a party on the top deck with fireworks. It should be fantastic. There are so many times that we walk around the ship and just pinch ourselves because it is so wonderful. There are many familes that appear to come here year after year, and today I heard one of the kids in those families comment "DO WE HAVE TO GO THE ANIMATOR'S PALET AGAIN, I HATE THAT ONE?" I can honestly say that our kids are so far from that attitude that it is funny to watch at times. Tonight I took them to a ventrilliquist (spelling) and all of our kids screamed with laughter, Tanner was quoting lines from the guy 30 minutes later. It was just fantastic. They littlery run from activity to activity, followed by a few relaxing minutes in front of the t.v. in our stateroom. They have access to come and go to the room the boys and I share, and they feel so big because of it.
Hayden loves to set up wake up calls and room service. They are just all so happy (KATIE HAS A FEW MELTDOWN CRIES ONCE IN A WHILE BUT ONLY BECAUSE SHE IS EXHAUSTED)
Thanks again to everyone for making this happen for Jodie and the kids, they are just soaking it all up!
Monday, September 12, 2005 6:45 PM CDT What a great time we are having!! Yesterday we went into Key West and went on a tour about pirates and shipwrecks. You have to know that Tanner and Hayden were loving every minute of it! I have never seen them so intent in a museum. Of course Hayden bought a small pirate-type gun and had it in his hand all day. He is usually a child that loses everything, but not this! He knows where it is and makes sure he doesn't lay it down somewhere it will get stolen. A special thank you to the two friends that gave the kids each $50 to spend on their trip. They know that that is all they get and have all made very wise decisions, making sure the things they buy are REALLY what they want. I love for them to learn that small lesson while we are here on this wonderful vacation.
Last night was our second night dining on the ship. We ate at Lumiere's. For those of you who have not seen the Beauty and the Beast, the restaurant was built around that theme. I had escargot for an appetizer and Matt got some nummy shrimp. It is so fun to order appetizer, salad/soup, entree, and then DESSERT! The kids have had so much fun ordering what they want. The have ordered shakes and Shirley Temples and usually don't order dessert because they are so full for appetizers and entrees!! The first night I asked Katie what she wanted to drink. She said, "what can I have?" and I said "Anything." She thought for a minute and said, "I think orange juice." The rest of us had shirley temples and she had an orange juice and loved it. I didn't know she liked orange juice that much. Tanner is in heaven. He is often found with a taco or chicken nugget plate from the snack shack at the pool. Then at dinner he orders a little off the kid's menu and a little off the adult menu. We have two great servers that move with us as we change restaurants. They treat us like we are dining in a 5 star restaurant, and it is so good for the kids to be able to use their best manners; which we have found are much lacking sometimes! :) Tonight we will be eating at Animator's Palate. It starts our black and white and slowly changes and "colors" itself with each course. We are excited to see exactly how that works.
We had a full day at sea today. Emmy and Katie did a few things in the children's activities and we went swimming. I went to a Shopper's "seminar." The "Personal Shopper" for the ship gave a few tips on places to find good deals. Then we got a huge book with coupons for free things on the next two islands we stop at. I am excited to find a few souveniors using the coupons for the free items!
Matt played a little basketball and enjoyed himself in the sun. Tanner and Hayden also went to their activities this morning. The boys stayed out last night until 1:00 p.m. It is nice that we don't have to worry about them and we decided that this is once in a lifetime... We all went swimming in the afternoon. There is a water slide that they all like to come down. Katie was a little scared at first, but she got up her courage and did it. They are all having the time of their lives!
Matt and I were sitting by the pool today. It was hot, but with a nice breeze, and we said, "Now this is a vacation." No driving home from the beach or kids saying, "I don't want to do this anymore, can we go?" Everyone is happy. If we're hungry, we go to the snack shack and no worries about the cost when we do. If you need a nap, go back to the cabin without inconviencing anyone. (I've used that one a time or two.) I think if Matt could troll off the back of the ship, he would think he was in heaven. One of my favorite things is to just watch out the window to the ocean. It is surreal to realize that we are in the middle of the ocean!!
Every mintue we are grateful for this amazing experience. I am sleeping in the cabin with the girls and Matt is with the boys. At first I thought I would miss the boys. I still do, but it has been so fun for the girls and I to be girls and to have so mucht time together. Good MEMORIES is what we are making for sure!!
We miss our family and friends, but know that we will be home way sooner than we want to be! My mom went to Louisianna the night before we left and I have been worried about her. If anyone knows how she is doing, will you please leave a message on the guestbook. I was worried about her because she is so tender-hearted and truly loves people and with so many people needing so much, I hope it is not too hard on her. I don't like not being able to find out how she is doing.
Tomorrow we are going to a beach in Grand Cayman. We are on an excursion that gives each of us a beach chair and umbrella and float tube. We are excited!
Will update again soon!
Jodie
P.s. Right now I am sitting in an internet lounge with very, very loud music playing from a live band. They were just playing "We Are Family". For those of you who don't know, I really like LOUD music. It is kind of a weird thing about me that most people wouldn't guess, but I am really enjoying myself. Maybe that is why I typed so much! I've got to get to dinner now! Talk at you all later...
Saturday, September 10, 2005 10:09 PM CDT Hello from the decks of the Disney Magic. We have started our fantastic journey, and we are having a fantastic time. We had a long but uneventful flight to Orlando, let the kids swim in the pool a bit, and got some needed rest.
Then we frantically got our bags repacked and out in the hall so they could be picked up by Disney. After a short wait we loaded up on a bus ride for 45 minutes to Cape Canaveril (sp?). The kids screamed with excitement when we rounded the bend and saw the ship, the M/S Disney Magic for the first time!
We boarded the ship at 1:00PM, played around in the pool, had dinner, and have been going ever since. We are only partially unpacked, but we are having a wonderful time. The seas were a little rough the first hour or two, and it made Jodie a little sea sick, but we got it under control quickly. They pass out sea sick pills like candy here! Anyway, we had a great dinner, and it is almost midnight, and our kids are still going! They are doing activities right now while Jodie and I are having free time.
We are just having a wonderful time and just can't thank everone enough. Tomorrow we dock in Key West. We will try and give a short report tomorrow.
Jodie says:
I was walking in the lobby today and looked over and saw a family sitting on one of the sofas with t-shirts on that read Make-A-Wish, so I went over and asked who wish were they fulfilling. I learned that one of the girls, 14 years old, had AML. Her last treatment was in April--same as mine--and this was her wish to come on a Disney Cruise with her family. She is still in remission and looked really good. She had a lot more hair than me thought. I told her that it was also my wish to be on this Disney Cruise, but we didn't have a foundation that would help. Instead, we have been blessed with an amazing community and wonderful friends who have come together and become such a wonderful part of our life. Thanks again for all you all have done.
Katie and Emmy are still wondering when they get to meet the princesses, so we have much to look forward too....
Monday, September 5, 2005 12:49 AM CDT Happy Labor Day to you all!
I don't know if that is what you say on Labor Day, but I hope your day is a good one regardless!! Sorry for the length of time between journal entries. We have been so busy around here getting ready for school (which starts tomorrow for my kids here in Anchorage). I am feeling a lot of saddness at the thought of them being gone again all day, but we also have been getting ready for our upcoming vacation. "Where are the Clarks going?" you ask. ON a DISNEY CRUISE!!!!!
We are so EXCITED!! That word actually doesn't seem to share our feelings, so I had to capitalize and put exclamation marks! We are so OVERWHELMED with this amazing gift. One of our neighbors, Julie Broyles, and another family friend, Heidi Anderson, have organized and raised funds for this extreme vacation for our family. Julie had initally tried to grant this "wish" for me through an organization that grants wishes to adults who are in their last year of life, but the organization had run out of funds for the rest of the year and was unable to grant our family the wish. On the day that the letter was delivered to our house stating that they would be unable to grant the wish, I was disappointed, but I had always thought it was one of those dreams that was unreachable anyway. On that same day, my friend, Heidi, called me and said she remembered that I had told her about this wish and wondered how she "could make it happen" and how she "was not going to take no for an answer." I told her that the organization had turned down our request and that it was okay and that I had only hoped that it would happen so I wasn't too sad. But just like she said, she made it happen with the help of a lot of friends and people from the Anchorage community, so we are leaving on our cruise on Thursday night!!!!!!!!!!!!!!!!!!!!!!! How exciting is that?! We still feel like it is a dream! I don't even know who has made this possible for our family to have this tremendous experience, but I hope that I will be able to thank each of them in person someday. There were so many amazing things that happened so that we are able to go on this vacation. I think I talked to Heidi on a Tuesday night, and by the next night, she had booked our cabins on the cruise! When she called to set it up, there was only one ship/cruise left for the entire year that had two cabins,(Because of the size of our family we had to have two cabins.)and that cruise was in a little over two weeks! She also found someone who donated a rental car and a condo for three or four nights in Orlando when we return from the cruise, so the kids will be able to enjoy Walt Disney World too. I don't know much of what else happened to make this possible, but I know Heidi and Julie have put in many, many hours and found many generous, caring people who have made it possible for our family to enjoy this extraordinary vacation.
It has been so hard for me to be able to accept this trip without feeling a lot of guilt/uncomfortableness (for lack of better words) and that was BEFORE hurricane Katrina! Now I feel even worse. I am not very good at receiving gifts or help from others. I always feel like someone else needs it more than me, and then I don't know how I will ever be able to show enough gratitude for all that people do and have done for us. But I know that we will be able to make wonderful memories, and we are so grateful for this once-in-a-lifetime opportunity. The first time I started chemotherapy in September of 2003, I was so sick that most of the time I was only able to sit in the recliner, so lots of my time with Katie was spent around the recliner. She would bring the laundry basket over and we would pretend that it was a boat or that she was a teacher or a mom (that was and is her favorite) or she would bring me a book to read to her and sit beside me in the recliner while I read to her. Well, the other day, I was sitting in the recliner, and she came over and started playing beside the chair and I asked her if she remembered how she used to play by me all day long, and she said no. I was so sad, but then I realized that this Disney Cruise is going to be a memory that will stay because of their excitement and their age, and I am so grateful we will be able to make lasting, treasured memories. In a way, that also makes this bittersweet knowing that we would not be going had I not had cancer and "needed" to make those memories. Those are only fleeting thoughts though, and they come and go quickly leaving just the excitement of our vacation.
This will also be the kids first airplane ride since moving to Alaska in 2000. They are almost as excited about flying as they are about the cruise.
Like I said before, I don't know how I will ever be able to thank everyone who has been involved. The only thing that we can do right now is to pray that they will be blessed above and beyond what they have done for our family, and that is what we have been doing. Please know, if you are one of those angels, that we are beyond thankful for this opportunity.
Needless to say, we have been busy getting ready for the cruise and school. I have been shopping all the clearance racks and second-hand stores for a few summer outfits and swimming suits. It is the perfect time to get some awesome deals! The kids are excited about their teachers and each of them is in a class with their good friends. I have also been walking on the treadmill each day to try and build up my stamina (and lose 30 pounds--can you do that in two weeks?) so I will be able to enjoy more things with the family. I can't believe it is in just a few days! We will try to update the website as often as possible, but if you don't hear from us too much you will know we are having way too much fun! :)
I wanted to thank those of you who have left messages in the guestbook. They have brought tears to my eyes many a time. It is nice to know that you are thinking about us and praying for our family and to hear a little bit about what is going on in your lives. It is always neat to hear from people we don't even know who are filled with care and concern for our family. That is another one of those cancer blessings. :) As always, we are grateful for your thoughts and prayers.
Hopefully the next time we update will be from Florida!
Jodie
Saturday, August 20, 2005 2:26 PM CDT SORRY ABOUT THE LENGTH OF THIS ENTRY! I GUESS I HAD A LOT MORE TO SAY THAN I REALIZED!
We had a really great week in Seward this week! Matt got to work there for a week, and so the kids and I drove down with our queen-size air mattress and stayed with him for four days. He just happened to get the handicapped room so there was enough room to have an extra mattress on the floor. The kids traded off sleeping in the real bed and on the air mattress. See the photo album for some of our adventures. We went out on the boat to light the boy’s rocket. I am not sure who was more excited the dad or the boys. Grandpa Charlie had come down and gone fishing with Matt the day before and had stayed over hoping for another day of fishing. When we went out to light the rocket, they both decided it was a little too yucky to go fishing that day. It was so fun to have him with us and to realize how much apart of our family he has become. He is a great blessing to our family and sometimes I think that even though he married my mom, Heavenly Father sent him to her for me and Matt. (Is that a little too self-centered =)?) His life experience has blessed us in many, many ways. Katie discovered that she had a loose tooth the morning we went out on the boat, and she was terrified that someone was going to tell Grandpa about her tooth before she got a chance to! No one did, and she was so proud to tell him that she had one loose tooth. She lost it the next day after a little complaining that her teeth hurt. I didn't think much of the complaining, because I thought it might be awhile before it fell out. The morning it fell out, she came to me and said it was really "bothering" her so I looked, and it was barely hanging on. I quickly yelled for Matt (the teeth thing is sooo his department!) and he pulled it right out! She was very proud, and I couldn’t believe my baby had lost a tooth!
The hotel where we stayed had an indoor swimming pool, so we all had too much fun in the hotel swimming pool. We went swimming every day that we could. I am proud to say that I even put on a swimming suit myself and got in on the fun. I can’t believe all the fun that I have missed in life, because I wouldn’t put on a swimming suit!
We also went to the Sealife Center. This is the third year in a row and nothing has changed, so it was a quick trip through--just hitting the parts that are the most fun. All in all, it was a wonderful family get-away. Matt worked every day, but it was nice to be able to enjoy him when he wasn’t working.
Can you believe it is almost the end of summer? I am getting really sad for the kids to go back to school. Oh, don’t get me wrong! I still have times when I think, “how many more days until school starts?!” But for the most part I have enjoyed this summer more than any other. I feel like I have been able to get to know my kids more than ever. It is so nice now that Katie is almost five. It amazes me how easy it is to go to the park or to the lake or out of town or anyplace because all my kids can get ready almost total on their own. It makes me sad to think that I put in all those years of raising little babies and now that I can “reap the rewards” of that and enjoy them in a different way, I don’t have much longer to be with them. BUT I know that I would not be able to enjoy my kids as much as I have were it not for cancer. I have told many people this small but important thing that I learned from a friend--THE OPPOSITION IN OUR LIVES IS DIRECTLY RELATED TO THE JOY THAT WE CAN FEEL. (Thanks, Carinne!) That is so incredible to me! The love that I have for my husband and my children and my extended family and friends has expanded in so many ways! Without cancer, I know I would have been able to feel only a small part of that love. What an amazing blessing!! My little sister called and left a message on my voice mail yesterday. It was just an ordinary message, but by the end I was crying—not tears of sadness but of joy because I love her so much. I would not go back and do anything differently. To be able to experience this kind of joy is priceless. And to be able to see Heavenly Father’s hand in my life and the lives of my family because He loves us and is guiding us through this--I can’t begin to count the blessings. There are many times that I cry, from sadness, wanting my life with my family to be much longer, but those times pass quickly. I understand that this experience is something that my family has to go through, and we will all come out the other end better people and that this experience is but a small moment in eternity and the refiner’s fire will help us to be worthy of greater blessings in this life and in the life to come. How can I not want that for my children? It also brings me great relief to see that the Julian family has continued on with normal life and to know that God is watching over them and that He will do the same for our family. Sometimes I start to stress about how Matt will do everything when I am gone, but he has so much faith and knows not to worry or fear. I am blessed and honored to have him as my eternal companion leading our family. I remember in January when we were in Seattle and we were so worried and scared and the turmoil and depression that we went through. I remember thinking that we were too young to go through this--that I wanted to have my mom and dad be responsible for making these huge decisions and consoling me. I know that sounds funny, but it is truly how I felt. Now I understand that we are ALL too young and immature to go through anything without a Heavenly Father to direct and guide us and how arrogant of us to think that we don't need Him.. It is amazing to me to think about all the “yuckiness” of January and all the joy of today. What a path Matt and I have walked down for these past months. I know that these summer months have been a miracle, one of many, and a gift because of your prayers. Thank you all for your love and concern for our family.
We have not told the children that we have stopped treatments forever. They have seen me get “better” after I stopped the chemo, but they know I still am affected by the cancer and we talk about “when/if Mom gets sick again.” Please pray for Matt and I that we will know the best time and in the best way how to share all this with them. We feel strongly that they do not need to live with that awfulness and dread any longer than they have to.
Once Again, I want you all to know that I KNOW that these days are a direct result of your prayers. What a miracle to think about how scared we were that I would be paralyzed in days or weeks in the beginning. Now it is months and I do not feel much worsening of my symptoms. I do feel a little more tired, but I am amazed at what I am able to do. Just this week in Seward, Matt said, “Wow, honey, sometimes I forget that you are sick.” That is a testament to your faith and prayers. How can we ever say thank you to everyone who has done so much for us?! You each are another blessing in our lives and I love to think that you are all a small part of our family history. I know that the only thing we take with us when we leave this life are our relationships (Have you heard the country song that says, “Have you ever seen a hearse with a luggage rack") and our family has been so blessed to have your presence in our lives and to know that we can have those relationships forever.
After saying all this, I want to end with the fact that I have not an ounce of doubt that God can heal me if that is His plan for me and my family. And if He does choose to heal me, I will be beyond grateful for all that I have learned through this, but if He does not--if that is not His plan for our family--Matt and I are trying to be prepared for the end, whether that be in months or years.
We love you all!
Jodie
Saturday, August 13, 2005 11:44 AM CDT Another week of summer has passed us all by. Hope you are all enjoying yours as much as we are. This photos (taken by me) is of Charlie (Jodie's mother's husband) and Hayden (our son age 9) and a friend of the family. Early on a tuesday morning, we launched our boat on the beach in Whittier (a small fishing town on the back side of a mountain about an hour away, at the end of a 2.5 mile tunnel) on just a spectacular day. There was no wind, and we were able to run about 32 miles an hour to a great fishing spot about 19 miles away, where Hayden caught the biggest coho (silver) salmon of the day (and his life). IT was just a great day. The fog rolled in on us, and it was like we were in our own cloud of heaven doing what we love! Hearing the reel's zing as another salmon took off running! We love Alaska!
Jodie had another good week. She went to visit the doctor who was pleased with the way she is holding up. She allowed Jodie to begin to start taking an increased dose of Ibuprofin which will help her deal with the aches and pains she has been experiencing. We laughed the other day because I remarked that I used to wonder whether it was bad to take 3 as opposed to two pills for a headache. Jodie takes about 16 of those a day in addition to her pain medications so I guess three or four once in a while for a headache won't hurt me right? PLEASE CONSULT YOUR DOCTOR, INDIVIDUAL EFFECTS MAY VARY (just kidding, had to throw that in there, in today's world people get sued for anything!)
Jodie took all of the kids to Goose lake for the day, and had a great time.
Last night the boys and I went to our tubing lake (Sand Lake) and tried water skis. It had been almost 10-12 years for me since I had been, and after about 3-4 times I was able to get up on one ski behind my boat. (Never intended for it to be a ski boat but it did pretty good). I had a blast and will remember how sore you get the next day. I even enjoyed the wake board which is something i had only tried once before. Hayden was able to get up on 2 skis and had a huge smile on his face (he was promptly done in about 5 minutes). We skied until dark (11:00PM as the daylight is getting shorter) and came home tired!)
Today we are having a birthday party for Emmy at the Anchorage Gymnastics center. She is 7 now (July 17). Kids love birthday parties and this should be no exception!
Well that is life in our family for the last few days.
We pray you all stay safe, and appreciate you checking in. YOur prayers on our behalf have uplifted us, and we enjoy each day together as a family to build memories.
Matt & Jodie.
Saturday, August 13, 2005 11:44 AM CDT Another week of summer has passed us all by. Hope you are all enjoying yours as much as we are. This photos (taken by me) is of Charlie (Jodie's mother's husband) and Hayden (our son age 9) and a friend of the family. Early on a tuesday morning, we launched our boat on the beach in Whittier (a small fishing town on the back side of a mountain about an hour away, at the end of a 2.5 mile tunnel) on just a spectacular day. There was no wind, and we were able to run about 32 miles an hour to a great fishing spot about 19 miles away, where Hayden caught the biggest coho (silver) salmon of the day (and his life). IT was just a great day. The fog rolled in on us, and it was like we were in our own cloud of heaven doing what we love! Hearing the reel's zing as another salmon took off running! We love Alaska!
Jodie had another good week. She went to visit the doctor who was pleased with the way she is holding up. She allowed Jodie to begin to start taking an increased dose of Ibuprofin which will help her deal with the aches and pains she has been experiencing. We laughed the other day because I remarked that I used to wonder whether it was bad to take 3 as opposed to two pills for a headache. Jodie takes about 20 of those a day in addition to her pain medications so I guess three or for once in a while for a headache won't hurt me right? PLEASE CONSULT YOUR DOCTOR, INDIVIDUAL EFFECTS MAY VARY (just kidding, had to throw that in there, in todays world people get sued for anything!)
Jodie took all of the kids to Goose lake for the day, and had a great time.
Last night the boys and I went to our tubing lake (Sand Lake) and tried water skis. It had been almost 10-12 years for me since I had been, and after about 3-4 times I was able to get up on one ski behind my boat. (Never intended for it to be a ski boat but it did pretty good). I had a blast and will remember how sore you get the next day. I even enjoyed the wake board which is something i had only tried once before. Hayden was able to get up on 2 skis and had a huge smile on his face (he was promptly done in about 5 minutes). We skied until dark (11:00PM as the daylight is getting shorter) and came home tired!)
Today we are having a birthday party for Emmy at the Anchorage Gymnastics center. She is 7 now (July 17). Kids love birthday parties and this should be no exception!
Well that is life in our family for the last few days.
We pray you all stay safe, and appreciate you checking in. YOur prayers on our behalf have uplifted us, and we enjoy each day together as a family to build memories.
Matt & Jodie.
Saturday, August 6, 2005 0:20 AM CDT Not much new to report here in our family. We had a great week last week with going to a friend’s cabin on Friday and Saturday.(It is fun to have friends with cabins!) If you click on the photos section you will see us enjoying riding four wheelers and camping in our tent near the cabin. It was a great weekend! A little rain, but lots of fun.
Jodie continues to hold pretty steady. Same as last week, good days and bad. Usually her good days are filled with taking the kids to the store for school shopping, or to a movie, or somewhere else fun. As I have said before, this was our goal, to give Jodie a great summer with the kids and it has paid off with huge blessings. No hospital visits, no chemo, no blood transfusions. We are truly making memories for the whole family. Her bad days typically consist of a some uncomfortable and wrestles pain and being very sleepy. It is great that she can bounce back from them though.
Only a few more weeks of summer for us. I hope to take the kids to the lake tomorrow and tow them on the inner tube. We have had rain for over a week but it is supposed to be nice tomorrow. I have been busy with work. A lot less travel, but still busy. The kids are usually playing outside or reading books. What a great thing that our kids love to read!
Well, I cant think of much else to add, but if Jodie does maybe she can add something.
Wednesday, July 27, 2005 8:22 PM CDT This feels like a particularly difficult update because we are about to report mundane things that we are doing, and we are still affected by the passing of Rhonda. I think that most who knew her benefited from knowing her so much that her influence has been immeasurable. She was a great friend and confidant to Jodie as they went through so much together. I think we can all also acknowledge how much of a miracle it was that she was able to endure the last 8 months. Jodie and I would read almost each day how she was struggling and was in and out of the hospital clear back before Christmas, and if you remember, she was only able to come home for short periods of time. So what a miracle it was that she could have more time with her family. We consider the knowledge and technology a gift from God, manifested in the minds and hands of men and women, who have dedicated long hours to relieve and help those like Jodie and Rhonda. Not just the doctors, but the many men and women who fill research buildings like the Fred Hutchinson Research Center in Seattle, and many other places around the country and world. Just think, when a person has the gift of singing, or teaching, or working with young people, or play the piano, other people are given the gift of a mind that absorbs almost everything that reads, or that asks the impossible question….what if we took cells and ______. I am quite certain that the spirit whispers ideas and thoughts into their heads, that until recently were not possible. Did they even know what a stem cell was 50 years ago?? I am quite confident that were she and Jodie to have suffered from this condition 20 years ago, the blessings of knowledge and technology that were poured out on Rhonda, Jodie, Mike, James and Kent, and countless others, were simply not available. Yes, God can move mountains, but sometimes microscopes and test tubes and most importantly you and I are his tools!
We really feel like we have been blessed tremendously through this ordeal, and we have seen it in the lives of those mentioned above as well. We also know that those who serve those names listed above, have also been blessed for their kindness, love and service. You are the tools we needed!
Jodie continues to do well. Last week, she has done some early school shopping for the kids, and has taken them to the movies, to the park etc. Each night she is quite tired and sore, and sometimes it hits very hard when she has not taken her medicine before the old dose wears off, but she is here, and she is active, and that is a blessing! The symptoms are progressing, but a slow enough rate that she can still function quite well.
We are looking forward to another fun weekend. I am taking the day off Thursday and Friday to go fishing with friends. This should be the 15 and 16th voyage of my fishing/ski boat. We have been using it to pull the kids on the inner tube as much as fishing so that is fun!
Thanks for checking in, remember, Brian and the kids journey has only begun. Please keep them in your prayers and thoughts for years to come!
Matt & Jodie.
Thursday, July 21, 2005 11:29 AM CDT Short Update:
Today has been a hard day for Matt and I. We received news this morning that our friend, Rhonda Julian, passed away. She was surrounded by her family and it sounds as though she slipped away very peacefully. We are grateful that she has finally been released from her awful pain and sickness but are saddened at the grief that Brian (her husband) and her four children will have to endure. We pray that, when they need it most, the heavy burden that they will have to carry will be lifted and they will be given the peace that they need to go on. Brian's and Rhonda's story has buoyed many of us as they endured this experience with tremendous faith. We are grateful for their example and friendship. She will be missed by many.
Journal Entry:
Another week has passed, and we are doing well. Jodie has continued to maintain her energy and stamina this week, with only a few bad days. I have said this before, but it is still true. There are days you would look at her, see her, talk to her, and think there is nothing wrong with her whatsoever. There are also times during some days where you would see her and wonder how she continues to carry on. Days where she seems so tired, worn out, and obviously struggling with pain/issues related to the cancer. Most of the time, the medication she takes helps keep her at her best, which is something we all love to see.
She continues to be busy with her photo albums (many have asked what kind of software it is), I will try and get the name of it put on here. (FLIPALBUM 6.0 SUITE)
The kids and I are still enjoying the summer. I took Charlie and his son and daughter in-law fishing for silver (coho) salmon in Seward. We had one of those days to remember. (Prepare for a fish story). We must have caught 40 and kept 15. Silvers come launching out of the water like balistic missles from a Trident submarine (how is that for a visual) and all you can do is just laugh and let them run till they get tired! It was a fun day. Look forward to more soon!
Jodie and I have been quite touched by the freindships we have made through this ordeal, and she will often say she feels cancer has been a privilege rather than a curse. It is in part due to the friendships she has made that she would say that. She has bonded with many people, even someone like Rhonda Julian, whom she never got the chance to hug in person. Yet this experience brought them close together, as they deal with things only the two of them can understand. (Both being mothers of 4, hoping and praying they can watch over their children regardless of their disease). Rhonda may be near the close of her earthly life, but we see that her and her family's faith in God has allowed them to endure, stand strong, be prepared, and continue. Her time here may be short, and so we ask that you pray their family and friends will be strengthened, and be blessed with acceptance and love and relief. Rhonda truly is a person we all can learn from. To all those who know and love her, we offer our love in support, and want you to know that our mind is occupied with deep feelings for what you are going through.
Matt & Jodie.
Thursday, July 21, 2005 11:29 AM CDT Another week has passed, and we are doing well. Jodie has continued to maintain her energy and stamina this week, with only a few bad days. I have said this before, but it is still true. There are days you would look at her, see her, talk to her, and think there is nothing wrong with her whatsoever. There are also times during some days where you would see her and wonder how she continues to carry on. Days where she seems so tired, worn out, and obviously struggling with pain/issues related to the cancer. Most of the time, the medication she takes helps keep her at her best, which is something we all love to see.
She continues to be busy with her photo albums (many have asked what kind of software it is), I will try and get the name of it put on here.
The kids and I are still enjoying the summer. I took Charlie and his son and daughter in-law fishing for silver (coho) salmon in Seward. We had one of those days to remember. (Prepare for a fish story). We must have caught 40 and kept 15. Silver come launching out of the water like balistic missles from a Trident submarine (how is that for a visual) and all you can do is just laugh and let them run till they get tired! It was a fun day. Look forward to more soon!
Jodie and I have been quite touched by the freindships we have made through this ordeal, and she will often say she feels cancer has been a privelage rather than a curse. It is in part due to the friendships she has made that she would say that. She has bonded with many people, even someone like Rhonda Julian, whom she never got the chance to hug in person. Yet this experience brought them close together, as they deal with things only the two of them can understand. (Both being mothers of 4, hoping and praying they can watch over their children regardless of their disease). Rhonda may be near the close of her earthly life, but we see that her and her family's faith in God has allowed them to endure, stand strong, be prepared, and continue. Her time here may be short, and so we ask that you pray their family and friends will be strengthened, and be blessed with acceptance and love and relief. Rhonda truly is a person we all can learn from. To all those who know and love her, we offer our love in support of you during this time.
Matt & Jodie.
Friday, July 15, 2005 10:36 AM CDT Despite Jodie's recent problems with an infection last week she continues to say over and over again what a good decision she felt she made to stop doing treatments and to just live. She said she feels really good right now.
She has many issues she continues to deal with (increased pain/soreness/stiffness/occasional infections) but those are things she has been able to manage with increased pain medication and anti-biotics. She is really loving life right now. Not only because she feels better, but because she is focusing on using her time wisely (spending it with the kids and I, with friends, working on photo albums, all things she enjoys).
On Tuesday she had her central line removed which was a simple procedure, but one that still required her to get cut/poked a little. She remarked at how she hoped she did not ever have to come back for things like this again. Once this heals it will be nice for her to swim and shower without worry of infection at the site.
She has been busy (once she started feeling better) with doing little things here and there. She is preparing for Emmy's birthday party which is going to be a "water party" with a pool and water things in the back yard. It should be a fun time with the kids.
The rest of us are just enjoying the summer, enjoying being outside, just glad to be in Alaska.
Still thinking and praying for the Julian's.
Matt & Jodie
Sunday, July 10, 2005 10:55 AM CDT UPDATE: Jodie has recovered and is doing better. She began to feel a little better on Friday evening and by Saturday morning she was doing better. She stayed home all day and rested? NO! NOT JODIE! She tore apart the boys bedrooms and re-organized their closets,cleaned out from under beds etc. I got the better deal by taking the kids out in the boat and pulling them on our "FEAR FACTOR" inner tube. They love to ride (at least Tanner and Hayden do, the girls are still a little scared of it). It has been a beautiful sunny week in Alaska! Jodie is still tired and has aches and is sore in her joints, but is still able to do most of what she wants to. Thanks for checking in. Still praying for the Julians.
She was able to c
Friday, July 8, 2005 10:55 AM CDT
Hi everyone, Jodie is having a bit of a rough time again. She had a fantastic day on Saturday the 2nd, we went to some friends cabin and she visited with friends on the beach while the kids swam and I towed kids on a tube with our boat, and she even rode a dirt bike motorcycle (something she used to as a young girl). . On Sunday night July 3, Jodie started to feel a little run down. We just thought it was because she had a busy day the day before. On Monday the 4th, Jodie and I planned to take the kids to the lake to pull them around some more (it was a beautiful sunny 75 degree day in Anchorage) and she noticed her central line (tube coming out of her chest) had some signs of infection (I will spare you the details) so she called the doctor, and he gave her some anti-biotic.
She has some type of infection again that is causing her to have fevers, and a very lethargic feeling of low energy with joint aches etc. It may be from the line itself, or some other infection that is just causing her trouble. I feel so bad for her because every time she starts to feel well there is another set back of some sort. I guess that is just how it is for people with cancer (we have seen many set backs with Jodie and our friends who have gone through this also). She also worries that every time she feels a new symptom she does not know whether it is caused by the cancer or just something simple.
Long story short, she is back on a new antibiotic (LEVAQUIN did not work), she is home, and plans to avoid going to the hospital if at all possible. She is sleeping a lot, and also has been working on the family photo albums and fun things like that. She has really enjoyed going through photos and adding captions underneath them. The program she has found is really neat. It is all done as a computer program. The program looks like a book. You upload your digital photos into it, click on it and the cover opens, and then each time you click it turns a page. It is really neat.
So, that is the latest here in our home, we ask that you continue to pray for Rhonda Julian and her friends and family, that they all will find peace, understanding, and answers to their questions during this difficult time. We know many of her friends and family check on Jodie, and we just want you all to know that even in our own world of issues, we constantly check on Rhonda, and we worry/pray for the things I mentioned above.
Thanks for checking in, I will update if anything changes.
Friday, July 8, 2005 10:55 AM CDT Hi everyone, Jodie is having a bit of a rough time again She had a fantastic day on Saturday the 2nd, we went to some friends cabin and she visited with friends on the beach while the kids swam and I towed kids on a tube with our boat, and she even rode a dirt bike motorcycle (something she used to as a young girl). . On Sunday night July 3, Jodie started to feel a little run down. We just thought it was because she had a busy day the day before. On Monday the 4th, Jodie and I planned to take the kids to the lake to pull them around some more (it was a beautiful sunny 75 degree day in Anchorage) and she noticed her central line (tube coming out of her chest) had some signs of infection (I will spare you the details) so she called the doctor, and he gave her some anti-biotic.
She has some type of infection again that is causing her to have fevers, and a very lethargic feeling of low energy with joint aches etc. It may be from the line itself, or some other infection that is just causing her trouble. I feel so bad for her because every time she starts to feel well there is another set back of some sort. I guess that is just how it is for people with cancer (we have seen many set backs with Jodie and our friends who have gone through this also). She also worries that every time she feels a new symptom she does not know whether it is caused by the cancer or just something simple.
Long story short, she is back on a new antibiotic (LEVAQUIN did not work), she is home, and plans to avoid going to the hospital if at all possible. She is sleeping a lot, and also has been working on the family photo albums and fun things like that. She has really enjoyed going through photos and adding captions underneath them. The program she has found is really neat. It is all done as a computer program. The program looks like a book. You upload your digital photos into it, click on it and the cover opens, and then each time you click it turns a page. It is really neat.
So, that is the latest here in our home, we ask that you continue to pray for Rhonda Julian and her friends and family, that they all will find peace, understanding, and answers to their questions during this difficult time. We know many of her friends and family check on Jodie, and we just want you all to know that even in our own world of issues, we constantly check on Rhonda, and we worry/pray for the things I mentioned above.
Thanks for checking in, I will update if anything changes.
Wednesday, June 29, 2005 0:33 AM CDT Hello to all our friends and family!!
Since Matt last updated, we have had a wonderfully, busy schedule. Tanner had Boy Scout camp all last week and was gone, for the most part, all week long. He did come home on Mon, Tues, and Wed night, but didn't get home until 8 or 9 each night. We missed him around home! He is such a great help to me and his brother and sisters and his dad, and often times is the peacemaker around home. I missed the puzzle piece that he is that fits into our family so well.
On Friday afternoon, Matt and Hayden went to cub scout camp. They spent the night and had tremendous fun which I heard about and saw in pictures many times. I don't know who had more fun--Hayden or Matt! I am so grateful that I felt good enough to take care of the girls and even to go pick up Tanner from camp on Saturday afternoon. He took us on quite a tour and had many, many stories to tell about each stop along the tour. I was so happy to be able to go everywhere he wanted to--with the exception of the range. He really wanted to show us that, (of course!) but it was up a windy path on the side of a hill and he knew the girls and I might not make it. So he lovingly and responsibly told us we wouldn't be able to visit the range.
While Matt was gone on Friday night and Saturday morning before we picked up Tanner, the girls and I bought candy bars and created a candy bar card for Matt and for my Mom. It was my Mom's birthday on Sunday, and it is our anniversary TODAY! (Yeah, 14 years!!) I surprised Matt on Sunday and, with the help of a great coupon (love those!) we were able to spend two nights at a hotel near Kenai while my Mom and Charlie watched the kids. I felt bad to take away the evening of her birthday, but she was so excited to help and insisted that I let her. I appreciated that so much. We had an amazing, wonderful time. I feel like it is a small miracle that I felt well enough to enjoy this special time with Matt.
Only good things to say about my health. I am feeling stupendous! I still have some achiness and back pain, but that is take care of with pain medicine. Sometimes I think I feel better than I did last summer, but that fantasy came crashing down today when we decided to take a walk on a small trail down to the Kenai River, so we started and realized that it was a pretty steep grade. Matt asked me if I thought I could make it back up and I said Of Course! At the bottom of the hill there was a phone and a sign saying that if you needed a shuttle ride back up the hill you should call "this" number. I laughed about it and jokingly told Matt we might have to call that number. We finished our walk down to the river and had someone take a picture and started back up that hill. I don't know how I made it up that hill! I was breathing hard and my legs felt like jell-o and we were only a quarter of the way up the hill! That sign wasn't so funny anymore. There was a bench about 3/4 of the way up the hill. (Where were they at 1/4 of the way and 1/2 way up the hill?!) I finally made it to that bench and thought I would surely die right there on that trail. Kim ran 13 miles in the Midnight Sun Marathon here in Anchorage last Saturday, and I couldn't even walk up a small hill! It was maddening and frustrating to me that my body didn't work the way I wanted it to. I did finally get up the hill (on my own; I didn't call that shuttle!) and it made me realize how it is to get old and not be able to do the things you once could and wish we were able to do. So frustrating! I did feel like I got some good excercise today though! =)
I have been able to do so many great things already this summer. It started with my family reunion that was so awesome and filled with a tremendous spirit of love; then my friend, Heidi, surprised me and visited for four days. We had so many fun times and wonderful talks. Then we were able to "borrow" a friend's cabin for a weekend and, even though it was raining or maybe because of the rain (???) we were able to spend a lot of time together and enjoy each other. And then this last weekend was an incredible time for Matt and I--we enjoyed every minute.
Our family has been so blessed this summer, and we know it is a direct result of your prayers. Thank you for remembering us. We love you all!
Jodie
Thursday, June 23, 2005 11:39 AM CDT Hi everyone, quick update before I run off to a training class.
Everything is about the same as last week. We are busy with summer, Jodie is still feeling really good. Doing projects like a fun digital photo album that she has found. She uploads photos into what looks like an electronic book. You open the cover with a click, and then you literally turn pages and look at photos and captions as if you were holding it in your hand. What fun memories she has enjoyed while working on it. It will be something that we will all enjoy when it is finished.
Tanner has been at scout camp all week, and Jodie and I have missed him a great deal. So has his partner in crime, Hayden.
Hayden and the girls have been home playing outside and enjoying the sunshine. We all had a fantastic time at a cabin some friends of ours own. We snuck up on Friday night, did a little fishing (ok, a lot) but Hayden caught his first two trout on his own fly rod, all by himself. It was a priceless proud moment for a dad!
We also wanted to send a special thanks to our friends at SBS. For those of you who work there, you know why! You are special people, and we have grown to love you for the many fun things you have done that have brought smiles to our faces. You will have a place in our family history forever!
That is all for now, maybe Jodie will do a little update paragraph on the end of this if I forgot anything! I am off to financial investigations training! I am sure it will be informative; I just hope I can stay awake, as sitting in conference rooms for hours is not my strong point!
Love Matt and Jodie!
Thursday, June 16, 2005 11:02 AM CDT It was great to have Jodie do the update last week. She is really doing well, (our strategy of stopping the treatments has really paid off). Jodie told someone a few days ago when they asked her how she was doing “Well, once you get the poison out of you it is amazing how good you feel” (or something to that effect!)
Her friend Heidi from Jodie’s single days came up for a weekend visit. They had a blast doing things like going shopping, going on a glacier cruise, etc. They just had a wonderful time together.
Jodie has been busy working on little projects for the kids like photo albums, journal writing etc. I think she has enjoyed re-living a lot of old memories. I asked her what age she was at in her journal, and she said “Well, I am still in my Brighton house” (which is where she lived when she was still in elementary school I think. She is just writing down memories of her experiences, which when you think about it, is really something we all should do. It takes a lot of time, but wouldn’t we all love to have those memories from our parents when they were young.
The kids and I have been having fun. Charlie and I took the boys halibut fishing in my boat down near Homer, AK (Deep Creek) and we caught our limit of 8 halibut. We threw one back because it was the size of a ping pong paddle. Now compare that to Charlie’s 45 pound lunker, and Tanner and Hayden’s 30 pound fish, we had a great time! The boys were starting to feel a little sea sick until they started reeling up fish! It was a fun day.
This has been the first week of summer for the kids, and they have enjoyed having a more relaxed schedule. I am working on a chore list for them to fix that though!! (I’ll bet by the end of the summer they will be glad to have homework and school back instead of chores!) Other than that, we are just enjoying life, and doing all that we can together. We thank you all again for making us smile, and loving us along the way!
Many of you check in due to our friends the Miller’s and Jullian’s. To you I would like to say a special thank you. We love them, and we recognize that Brian and Rhonda are having an especially difficult time right now, and we wish to add our love and prayers with yours on their behalf.
Wednesday, June 8, 2005 11:13 AM CDT It has been awhile since I felt good enough to add a journal entry. Matt does such a great job. I am always so thankful that he is so good about keeping the journal current and honest. But I love to be able to jump in every now and then to let you know how I am feeling.
This week has been so incredibly uneventful. (I LOVE uneventful!!) It is the kid's last day of school tomorrow, so there has been no homework and just a lot of fun happening in their classes. No homework means a lot more time to spend with them each day after school. Sometimes I get them in trouble because their chores don't get done before dad gets home. I love it when they come home and throw their backpacks on the floor,(Matt doesn't like that :) sit by me, and just hang out, so at times I forget to remind them to get their chores done. Those are precious moments that we don't always appreciate as we run this chaotic race called life, and I am going to enjoy every one of them. During the day, Katie and I have just been hanging out. I think we are starting to get sick of each other! :) We went to a friend's house for lunch on Monday. It was so fun to be able to visit with some friend's from church while we were there. Yesterday I did a lot of cleaning--cleaning and organizing places that have needed a mother's touch, if you know what I mean. There is still more of that to do, but I think today we are going to run some errands and do some shopping. Believe it or not, chemotherapy is probably a lot cheaper on Matt's wallet than my feeling good! :) He is probably lucky I rarely felt good while I was doing chemotherapy! Truthfully, Matt is pretty lucky. I like to shop, but only sales, second-hand stores, and garage sales. Few things in life can equal the excitement of finding a real "treasure" at a second hand store or a garage sale! :)
Physically I am feeling really good. I have become so used to the numbness in my legs that the only time it bothers me is when I stand up after I have been sitting for a short while. My legs are very stiff and it takes a minute to get them moving. I don't feel like symptoms have changed much in the last few months, but it is so hard to feel changes when everything has some degree of numbness. From what I can decipher of what the doctors tell me and how I am feeling, I think the larger tumor, running close to two feet of the length of my spine, is on the nerves concerned with balance and vibration. I know that sounds weird, but that is why it is a little bit hard for me to walk. My "skin" is not sending the correct information to my brain which is causing my balance to be affected. If I close my eyes, I have to be touching something or I will fall. It is not that I am leaning on something that is holding me up, but when I touch something it sends the correct message to my brain. This affects me most in the shower when I am washing my face, when I am saying a prayer and close my eyes while I am standing, or when I walk stairs. As long as I have some part of my body touching the wall, my balance is just fine. It is so very interesting to me how the body works. Anyway, the point of all this is that I am so grateful that the cancer came back on a nerve like that rather than a nerve that would affect my motor skills. I am sure there will come a time when things will not be so easy, but I am grateful for each day I can be up and around and with my family.
Matt, Charlie, and the boys are going halibut fishing on Thursday night. They plan to fish from evening to past midnight so they can catch their limit for both days. Pretty tricky!!
On Saturday, we are hoping to be able to spend the day with some friends at their cabin. That should be a great way to start summer vacation! We are planning lots of trips to the park with a few free movies thrown in now and then, and hopefully Matt will have to work in Homer or Seward, so we can take a few road trips too.
One last thing--I wanted to thank our friends Cecilly, Julie, Rochelle, and Sara and their husbands. They are amazing friends and neighbors and we are so blessed to have them in our lives. While my family was here for the reunion, they picked up all THIRTEEN of the kids and took them to pizza, the movies, and the park so that the adults could have time alone to enjoy each other. They even arranged with friends from church for lunch to be brought to the house for the adults!! It was amazing!! We spent close to five hours looking at pictures from our childhood and sharing memories. What a precious time that was to be together without stress or interruption. Sometimes it amazes me the way people are inspired to bless our lives. I know they will each be blessed for their acts of kindness and selflessness and I hope they know how much they blessed our lives.
There have been so many who have blessed our lives in large and small ways, and we are grateful for each act of service. We are especially grateful for your prayers as we enter this next phase of cancer. Because of those prayers, we feel the peace that can only come from a loving Heavenly Father. I am amazed after making such a life and death decision that I have not felt any turmoil. That is why I know with a surety that I made the right decision and that as we follow this path that has been placed before us, we will be blessed and guided each step of the way. We love you all and, again, are grateful for your continuing support and love.
Jodie :)
Wednesday, June 1, 2005 9:36 AM CDT I HAVE SOME GREAT NEWS!! Jodie is feeling much better, and her doctor has taken her off the oxygen. Her fevers have not come back, and she feels like she has had another small miracle, and was able to enjoy a couple of great days with her family. She is up and around, and doing lots of things. She still can get short of breath if she does too much, but can recover if she sits down. It is really another of so many small blessings (although this one feels pretty huge because I was worried Jodie may be slipping and she would not recover!)
After a lot of prayer, and consultation with her family (mother, father, brothers & sisters) Jodie has decided to stop all of the treatments (no more chemotherapy) and has chosen to live the highest quality of life that she can, in order to spend her time at home with her kids. There have been so many times that the treatments themselves have brought many health problems and have just made her feel plain awful. In some ways, her life was put at more risk due to infection than due to the cancer.
Jodie has found peace with the fact that although this decision may have long term consequences, and may allow the cancer to grow unchecked, she really thinks she can a live longer and better life by making this choice. Everyone who knows Jodie knows how proud I am of her. She has done EVERYTHING available to her for treatment, and has taken blow after blow as so many people do that are fighting cancer. The treatments truly are what hurts them the most. Her disease continues to progress, she has pain that is controlled by medication, her numbness is increasing, but she knows what she needs to do.
Please support her in this decision as it was a very difficult one for her to make. Please pray that she will be able to spend as much time as she can here on earth, and be in the best state of health she can, so she can be home with her children. She said her main goal is to have a great summer with her kids, and hopefully enjoy another school year with them. I know with her faith, combined with yours, that is not only possible, but a surety.
Again, please don't be alarmed by this message. We really feel Jodie has lots of time left here, and she just wants to make the most of it. As always, your love and support have lifted us up, made us laugh and smile, made us cry with you, and your acts of service have humbled and touched our lives. I will continue to update, probably once a week. Thank you for all of you out there who love us, WE LOVE YOU BACK, more than we can say!
Saturday, May 28, 2005 9:00am **UPDATE** I wanted to tell everyone we appreciate their love and concern this last week. I did not mean to alarm everyone with my last entry. We were just not sure where all of this was going. Jodie is holding steady, she was able to go to Seward and has had a great time. She is pretty much confined to sitting down and sleeps much of the time, and the oxygen is keeping her comfortable. The fevers have not returned, but her lung function is still the same (requires 4-5 liters of oxygen) which has been something to get used to for her. The good news is it has not gotten any worse. Thanks for your prayers, she is enjoying this time with her family as you have asked!
Wednesday, May 25, 2005 10:05 AM CDTJodie and I have made a decision to have her come home from the hospital to be with her family today. She continues to have fevers and chills, and difficulty breathing without 5 liters of oxygen. At one point she was placed on a full face mask with 12 liters of oxygen but this was due to recovery from the lung wash procedure. If you have been checking, I said when we first admitted her she was on 2 liters of oxygen. They have stablized her at 5 liters through a nose tube, so she can laugh, talk, eat etc.
The doctors (Oncology, Pulminology, Infectious Disease) are still not sure exactly what is causing these symptoms, but all agree something is going on that is not good. They have 3 theorys:
1. Standard Pnumonia (they are almost ready to rule this one out)
2. An "Oppitunistic Infection" (they plan to treat with bactrum)
3. Lung tissue damage/irriatation from extended cheomotherapy
They can and are treating for theory #1 & 2, but have decided everything they can do for her at the hospital they can do at home. We will just see how things go and do what we can.
So for now, she is thrilled to be coming home, but knows she is still very sick, and we pray she will have as much time as possible at home with her extended family and kids.
The sad/frustrating/confusing part about this is, we just don't know what will happen to us from here. WE ARE NOT IN CONTROL. We place our faith in God, and ask him for what we hope, but acknowledge that we will accept whatever his plan is. Jodie could either wake up one morning feeling 100
Monday, May 23, 2005 1:45 PM CDT Update on Jodie, her fever is holding steady between 99-100.5, which is not great news after going on 4 days of antibiotics and counting. She said she feels pretty good just sitting in bed, when she gets up she gets very short of breath and they have had to increase her oxygen.
When she was first admitted, her blood oxygen level was 88 without assistance. It should be 98 or a 100.
Yesterday it was down to 75
Today, it has gotten worse (not sure of the number) but they have had to increase the amount of oxygen neccessary to keep her up around 94-96.
She is having a procedure today called a lung wash, which involves going down her throat (all with sedation and anthesia) inserting a tube into her lung equiped with a camera, injecting in some water type solution, then withdrawing the fluid to have lab work done to it. This will tell them exactly what they are dealing with. It takes 2 days for the result, so best case scenario, she is in the hospital till Weds and might be able to come home on oxygen. For that to happen she needs to have her fevers under control, and for the results to be negative on the lung wash. If they are positve, then she stays for a while until they have treated it and gotten her undercontrol.
At this point, things are not life threating, everything is pretty good, but obviously this is not where she wants to be right now. SHe is devistated she can not be out with her family during this week. They are all arriving for the re-union. But at least everyone is here to support her. She is doing the best she can emotionally, but because her family is here, we ask for no visitors or phone calls right now. It is hard for her to talk on the phone and if she starts to cry she has a hard time breathing. I will keep you all informed.
Thank you for your love and support!
Matt.
Saturday, May 21, 2005 5:55 PM CDT **UPDATE** Jodie has been struggling with fevers and low energy/fatigue the last few days of between 100-101.5. They discovered she has an infection in her blood and have prescribed anti-biotics and are letting her take them from home. If her fever goes above 102 we will probably have to go into the hospital, but she slept ok last night so we are hoping these will do the trick. Will update more if we need to. **SHE IS IN THE HOSPITAL WITH WHAT LOOKS LIKE PNUNMONIA SHE HAS HAD A FEVER OF UP TO 103.5, AND A GREAT DEAL OF DIFFICULTY BREATHING. SHE IS ON 3.0 LITERS OF OXYGEN, AND IS DOING BETTER, BUT WILL BE IN UNTIL AT LEAST WEDNESDAY (WHICH DEALT A HUGE BLOW TO HER BECAUSE IT IS THE OPPOSITE OF WHAT SHE WANTED, BUT SHE IS STRONG, AND IS DEALING WITH THE BEST SHE CAN) THANKS FOR YOUR PRAYERS.
Tuesday, May 17, 2005 5:55 PM CDT
Not a whole lot to update this week, but for the sake of fresh information I thought I would do it anyway.
Most of you know Jodie chose to stop the chemo therapy treatments for a few weeks to allow her to rebuild some strength and energy for the upcoming family re-union next week. It has already allowed her the opportunity to do a few more things that she normally would not be able to do (LIKE SHOPPING FOR FUN THINGS FOR THE KIDS ROOM OR LIVING ROOM) and spending time with friends, taking Katie to dance class or pre-school.
Pain wise, she is still doing about the same, some nerve pain in her abdomen still but she is usaually able to control that with medication and rest.
Thank you for your many prayers that she would have more energy and be healthy enough to do fun things with her family. They are working and we thank you for your faith!
If we could, may we ask that you also visit Rhonda Jullian's site, and say a few extra prayers for her that her blood counts will stablize for her so she can spend more time with her kids as well? Thanks, they, their family and friends, have been very supportive of Jodie.
Matt & Jodie.
Monday, May 9, 2005 3:57 PM CDT Well it has been a week, a fun week at that! We really enjoyed Mother's Day weekend. Friday night the kids and I took Jodie to our favorite family cafe for a breakfast dinner (since making her breakfast on Sunday morning would never happen because they are frantic as it is). Then on Saturday night Jodie's Mom and Charlie, and Obe and Kim took us to the Double Musky (popular steak house about an hour away) for prime rib. It was excellent. Lots of flowers from the kids to Jodie (Gerber daisy is her favorite) and home made cards etc. She loved it.
Jodie went to the doctor this morning. Her platelets were high enough to start chemo, but after a lot of prayer and thought, she made a tough decision. If she started chemo, she would be wiped out while her family is here at the end of May. So, she plans to wait until the first of June to resume the treatments. When she does, they may modify it even more (NEW: one day per week, each week OLD: 5 days per week, once a month) to minimize the side effects.
Jodie is doing relatively well. She has some increased pain in her abdomen that is nerve related (kind of a shocking sensation). She is usually able to do one big thing a day (going out to lunch or dinner, taking Katie to school etc) but then she is really wiped out. That factored into the decision to take a break from the treatments. We really need to pray that she has more energy for that week, and we decided the best way to accomplish that was to take a little break. Yes, there are some risks to doing that, but feeling well enough to participate in this re-union is really important to her.
So please pray that she will gain some extra energy in the next few weeks, and that she will be able to resume treatments with minimal consequences in June.
Thanks for checking in.
Monday, May 2, 2005 6:55 PM CDT Today Jodie went to the doctor to check and see if she could start chemo and her platelets and red blood cells were too low to start (platelets 28) so they gave her 2 units of red blood cells to help pick her up a little. She was feeling a little tired but not as low as before. She may go back in on Friday to see how the counts are doing to see if she is going to start next week.
We had a great weekend as a family, Jodie was able to go to dinner with a few friends, (something she loves to do) the kids and I put our boat in the water and went for a 1 hour boat ride and had a great time on a lake (beautiful sunny day in Alaska). The kids LOVE TO DRIVE THE BOAT!!!!
God flipped the switch from white to brown to GREEN this week. The snow is gone, the brown dirty grass and bare tree brances are quickly being replaced with many shades of green, WE LOVE SPRING!!
Hope all is well in your homes, take care and thanks for checking on us!
Matt & Jodie.
Tuesday, April 26, 2005 9:58 AM CDT Sorry it has been almost a week. Jodie has been doing well the last few days. She was able to go to church, spend a little time with friends, and has been able to do one big thing a day usually. We have been concerned that her platelets are getting really low (it is to be expected but she does better when they are higher, and they need to be at at least 65-70 before she can start the next round of chemo). They were at 22 yesterday, so that is low, but not critically low. She may need a little dose of platelets or red blood cells this week for a pick me up.
Our girls have continued with their dance classes, the boys are plugging away at school. We set up the trampoline we got at Christmas time so every one has been bouncing like crazy outside. Maybe we should just instal one in a bedroom and pad the walls???
Anyway, that is about all that is new for now. Take care everyone!!
Matt & Jodie.
Wednesday, April 20, 2005 11:52 AM CDT Jodie continues to do really well at home. She did go into get some blood and platelets today. No significant problems or fevers, and has been able to get out of the house to do some fun things like take Katie to her jazz/tap/balet class, and Hayden's school play. Of course she gets a little tired in the evening, but I know she is pleased to be able to do what she is doing and so am I. Thanks to all of you for your love and support. We hope your families are doing well. It is wonderful to see that Mike Miller and Rhonda Jullian could come home from the hospital too as we are sure they were having some type of endurance contest to see who could stand hospital food the longest! Not sure there can be a winner in that contest!!
HERE IS SOME STUFF WE PLAN TO KEEP ON HERE FOR A LITTLE WHILE:
Friday, April 8, 2005 7:33 PM CDT
Jodie and I got the results of her MRI back yesterday. It shows her tumor is still growing,(at t-7 through t-6) and obviously is causing more swelling and problems in her spinal cord with numbness. There is also some areas in the neck and the rest of the cord that concerns them. They did not come out and actually call them tumors, but they tell us there is a long section of the cord that appears white on the MRI and it should be grey or dark. They believe it is related to the cancer and they found that section in January (when we thought she had a 7" tumor, it has now grown to be about 12" of white now in April.)
We are not sure what to do with this information right now. We are discouraged, and worried, but have not made any decisons They want to do another MRI in three weeks before it would be time to start the next round. We will make decisions then based on prayer and what we feel is right. For the next three weeks, we just have to help Jodie through the side effects of this one she just finished today (low blood counts, fevers, low energy etc)
Thanks to all of you for checking in. We know this will be a blow to you. Please do not let it shake you faith, we still need your love, prayers and support. We feel it every day in the strength of your notes, phone calls, and silent prayers. Our love for family and friends has grown so much through this experience.
Matt & Jodie.
Saturday, April 16, 2005 5:02 PM CDT Jodie is home from the hospital. She is doing better (she still had low grade fever of 99 this morning) but they decided to let her come home and continue the antibiotics at home so we have a home health nurse coming in today to do that. Overall she feels pretty good, a little tired, but doing good. Happy to be home again as you can imagine. She has a team of two nurses (EMMY AND KATIE WITH THEIR DOCTOR KITS) working on her round the clock so we know she is in good hands!!
Hope you all have a great weekend, and we will update more later.
HERE IS SOME STUFF WE PLAN TO KEEP ON HERE FOR A LITTLE WHILE:
Friday, April 8, 2005 7:33 PM CDT
Jodie and I got the results of her MRI back yesterday. It shows her tumor is still growing,(at t-7 through t-6) and obviously is causing more swelling and problems in her spinal cord with numbness. There is also some areas in the neck and the rest of the cord that concerns them. They did not come out and actually call them tumors, but they tell us there is a long section of the cord that appears white on the MRI and it should be grey or dark. They believe it is related to the cancer and they found that section in January (when we thought she had a 7" tumor, it has now grown to be about 12" of white now in April.)
We are not sure what to do with this information right now. We are discouraged, and worried, but have not made any decisons They want to do another MRI in three weeks before it would be time to start the next round. We will make decisions then based on prayer and what we feel is right. For the next three weeks, we just have to help Jodie through the side effects of this one she just finished today (low blood counts, fevers, low energy etc)
Thanks to all of you for checking in. We know this will be a blow to you. Please do not let it shake you faith, we still need your love, prayers and support. We feel it every day in the strength of your notes, phone calls, and silent prayers. Our love for family and friends has grown so much through this experience.
Matt & Jodie.
Thursday April 14, 2005 UPDATE: I took Jodie to the ER last night with a fever of 101.5. They admitted her to the hospital for antibiotics and observation. Probably will be there for a couple of days. Will update more later. (Just found out she will be there until at least Saturday).
Tuesday, April 11, 2005 UPDATE: Jodie was very low on white & red blood cells and platelets from the chemo and got an infusion of platelets, two units of red blood cells today and is doing much better. It gave her enough energy to make her family dinner which is something she loves and has not been able to do for a while. Blood products help a lot and we are so grateful to people who donate blood products as they are a life saver to people in her condition. I just wanted to say thanks for the cards, letters, and acts of service given to us the last few weeks. I also want to say thank you to the many people who check quietly and don't leave messages, we know you are out there! Thanks! Matt.
Friday, April 8, 2005 7:33 PM CDT
I have sat down to write this entry 3 or 4 times, and can never quite figure out what to say. Jodie finished her last day of chemo for cycle three today. She made it through quite well.
Jodie and I got the results of her MRI back yesterday. It shows her tumor is still growing,(at t-7 through t-6) and obviously is causing more swelling and problems in her spinal cord with numbness. There is also some areas in the neck and the rest of the cord that concerns them. They did not come out and actually call them tumors, but they tell us there is a long section of the cord that appears white on the MRI and it should be grey or dark. They believe it is related to the cancer and they found that section in January (when we thought she had a 7" tumor, it has now grown to be about 12" of white now in April.)
We are not sure what to do with this information right now. We are discouraged, and worried, but have not made any decisons They want to do another MRI in three weeks before it would be time to start the next round. We will make decisions then based on prayer and what we feel is right. For the next three weeks, we just have to help Jodie through the side effects of this one she just finished today (low blood counts, fevers, low energy etc)
Thanks to all of you for checking in. We know this will be a blow to you. Please do not let it shake you faith, we still need your love, prayers and support. We feel it every day in the strength of your notes, phone calls, and silent prayers. Our love for family and friends has grown so much through this experience.
Matt & Jodie.
Monday April 4, 2005 Update, Jodie started chemo again today, she is resting right now, doing pretty good. She has a busy schedule of appointments this week, the blood she got on Saturday gave her needed energy to do things with her sister, they had a great time looking at family photos etc.
Saturday, April 2, 2005 10:28 AM CST
We have a lot to report. Jodie has some good days and bad days this week. She was able to go to lunch with her sister and family one day, and has really enjoyed having her sister here. She was continually getting weaker and we found out she needed some red blood cells so she will be getting a transfusion this morning.
The numbness in her legs has moved up into her torso which tells us and the doctors the tumor is progressing. So the doctors have decided to go back to the first cocktail of chemo drugs we started with the Topotecan and the Cytoxin (with a reudced dose of cytoxin). Those two drugs were stronger and Jodie felt there was possible improvement while she was on those, but if you remember it caused serious problems with her platelets. It is a very bone marrow suppressive combination of drugs, but we feel like we have to go that route in order to fight the tumor.
Jodie starts this combination on Monday. She also has an MRI on Tuesday to get a look at the tumor inside the spinal cord to measure it's growth.
We also had to take Jodie to the E/R last night due to a lingering mild case of pnumonia. SHe had a fever of 102 last night. They got us in and out in 3 hours which is a record for us, especially on a Friday night. (Blessings in lots of small things).
We plan to get Jodie her blood today, and hopefully take it easy today watching a semi-annual world general conference (where our church leaders give talks and messages about current day events, it is brodcast on cable and the internet). It is something we really enjoy because the messages are always so uplifting and filled with hope. I have a close friend I work with who told me with tears in his eyes he just knew someone had prepared a message that would be especially meaningful to us. I think he was right because I could sure use one.
None of this is life threating so I don't want anyone to think the worst, just a really rough road for her right now. In true charachter, Jodie remains happy and positive and eager to face her next challenge. I don't know how she does it sometimes. But then again, I do if you know what I mean.
Enjoy your weekend everyone. I will update if there are any changes.
There has been a problem with these links not displaying on our page, not sure why but here they are. They need our prayers as well.
http://www.caringbridge.org/ar/mikemiller
http://www.caringbridge.org/tn/rhondajulian
Monday, March 28, 2005 8:57 PM CST We had a great Easter. Jodie was able to help the kids paint eggs and we had a nice dinner at the Lowry's. Here is a picture of our family with the girls in their new Easter Dresses (minus the gloves and matching purses which we left at home).
I am not quite sure how to descibe Jodie's condition the last few days/weeks. She has said that she tends to be overly optimistic, and I am overly dramatic, and the truth lies somewhere in betweeen. Here is how I see things. She has not been feeling well at all, due to sickness, treatments, her tumor, and the combination of all three. She needs to sleep a good amount of the day. She gets short of breath when she is up for a few minutes doing things. Her blood counts were up and holding steady at last check so that is good news. She like Rhonda Jullian and Mike Miller want nothing more than to be normal, and do normal things and spend time with her kids.
At times, she will have a burst of energy, and will seem normal. Then, a few minutes later she just has to lie down and take a rest for a while. It is a completely different set of side effects than those of the chemo she had in the fall of 03, winter of 04. Those were powerfull treatments. She would be violentyl ill (me injecting drama again) with vomiting within a day or two of starting treatement lasting up to two weeks at times. This is nothing like that at all. Last year, she would be in the hospital for a week during the treatment, and her body was strong and resiliant and would rebuild quickly.
This is a very slow and subtle form of side effect that creeps in (drama) and zaps all of her strength. Her mind and spirit are stronger than her body this time. We are not sure if it is working as she continues to have some increased nubmness and pain, but for now we rely on faith that this is what we need to be doing right now.
Thanks to all, we feel your love, really we do!
Something I know will brighten her week is a visit from her sister Susan from Oklahoma (arrives on Tuesday night) for a week.
Saturday, March 26, 2005 I am afraid Jodie is having more trouble again. She has not kicked the cold/cough and is really suffering from low energy and shortness of breath. I may taker her in for a lab today to see if she may need a transfusion of some red blood cells. Easter is almost here! I will update later if I have more info. UPDATE **Blood counts were ok, so no transfusion. She got a lot of rest this afternoon which seems to have helped some. Happy Easter!
Thursday, March 24, 2005 3:17 PM CST Good news, I think Jodie has finally turned the corner on the infection that she had. In her words "I don't think I have ever felt that sick as I did the last few days" She would lay in bed or on the couch with her eyes closed and did not eat, drink, drink or speak (hardly at at all). We took her to the E/R one night to get IV fluids, and the next day she got some more and they perscribed some strong anti-biotics. They seemed to do the trick. She is still dealing with a cough and some fatigue and side effects of the chemo, but is alert, awake and aware and able to smile and laugh and watch a favorite t.v. show! That is great news. Thanks for the extra thoughts and prayers on her behalf.
We are preparing for Easter, and a trip to the dentist today. Doesn't that seem backwards to you? Shouldn't we have a check up after Easter? I mean, you just know they are going to make us feel guilty for eating candy and you know how kids are with those jelly beans on Sunday morning!
I once again owe thanks to God for blessing me with such a beautiful wife and family, and for the blessing of being together at holidays. We have been uplifted and supported by blessings from above in the form of loving friends and family stepping in to help in so many ways. May you be blessed for your service to us!
Please continue to pray for those linked to our site...they have been blessed by your caring words you have left for them.
Maybe more on Saturday and Sunday.
Tuesday March 22, 2005 Jodie has completed cycle 2 of Chemo. She has a severe cold/cough that has really zapped her strength. What this means is that she has felt miserable for almost a week now, and has the side effects of her chemo to look forward to in a week. She is home and resting, So....although it sounds sad, at least you know what she needs in your prayers. We are hanging in there. Thanks for checking in, will update more soon.
Saturday, March 19, 2005 11:07 AM CSTWe took our bikes down and are taking the snow tires off today, which is a sure sign we are giving up on winter and hoping for spring! It has been sunny and 40 for the last week and most of the snow is gone. The kids have been begging me to take them down! I am sure it will snow now that I have done this.
An update on Jodie: She has improved since I last updated and we are pretty sure she had some type of flu or virus that caused her to be so wiped out. Today is day four of her chemo treatment with just a couple more to go. The new drugs are called Irotecan and Vincrystine. We have been told to expect the side effects to hit about 10-14 days after this stuff. Hopefully it will not be so long between recovery periods for her.
We continue to marvel at the love and service people give to her, and they truly lift her spirits. When she feels well enough she loves to read peoples notes on the website and email and wants me to thank everyone.
This weekend also marks the beginning of spring break! The kids are very excited to be able to get a break from school.
We pray all is well with you and your families, and that you enjoy the spring as well.
I will update more in a few days.
Love Matt & Jodie
Thursday 03/17/05 12:30PM Jodie is in day 2 of her treatment. Doing well so far. She had a much better night last night. All is well so far.
Tuesday, March 15, 2005 1:17 AM CSTSome good news and bad. Jodie’s platelets are up to 62 (she needed a 100 but they felt it was important to continue), They are going to try a different combination of chemo drugs that will be less invasive on her bone marrow (causing problems with her blood counts). Jodie’s doctor called her bone marrow “wimpy” today from all of the chemo and the bone marrow transplant she had last year. So, this is the bad news in Jodie’s opinion. It causes different side effects like the kind that makes you sick with problems at both ends if you know what I mean!
She will get some training on how to deal with the new side effects (not that she needs it because she has been there before but it is required). If all goes well, she may get to start on Wednesday. So…that is good news. She is glad to be doing something proactive to fight those tumor cells.
When I got home tonight she was feeling really sick and has slept most of the evening. We are not sure if it is just the flu like everyone else gets or if it is related to her other problems. That is a tough thing for her. She is never sure. Every ache and pain, fever etc could be normal or could be related. It is just not black and white like it is for the rest of us. If we get sick, we know we are just sick and will get better. When it happens to her it is like “Oh no, what does this mean?” Hopefully she will get over this hump and on to the next one.
Many people have asked how her numbness and legs are doing. The numbness has continued to progress in both legs, but she still has limited feeling in her legs and feet, and is still able to walk just fine. For a while she had a problem with her calf muscle that caused a limp, but that has gotten better. Again…is that just a pulled muscle or something related? When it first develops you just don’t know. Her pain has been 100 anageable with the resumption of a drug called AMATRIPTOLENE (not sure if that is spelled right) and some pain killers. She has not had any severe outbreaks of pain for almost three weeks which is great news.
Lots of people ask me how I am doing. I am holding up quite well and have been able to work full days the last three weeks which has helped my spirits. It is good to have something to do at work because it is nice to put some energy into something I enjoy. We are keeping up on all the household chores, and appreciate everyone’s offer for help but we are managing quite well. We thank you all for your love and support. I say that almost every time but I really mean it. We would be so lonely without you all!
Love Matt & Jodie.
Please also continue to pray for the Miller's and the Julian's. They are dealing with more trials of their own.
Saturday 03/12/05 Jodie had another lab today. She is still low on red blood cells and platelets, but holding steady(28K RBC and 50k Platelets). She is kind of stuck in no mans land. Not low enough for a transfusion but not high enough to feel well or to restart chemo. She is tired of feeling this way..but we know we must be patient and have faith.
Friday 03/11/05
This will serve as an update until Jodie puts does one. Jodie had her lab yesterday, which showed an increase of platelets from 42K to 50K. Headed in the right direction, but still not enough to start chemo (90-100K needed). Her red blood cells have fallen some which may require for her to get a transfusion. She has had a low grade fever and aches recently but she is positive and goes in to have her labs checked on Saturday.
Monday, March 7, 2005 11:58 PM CST Jodie asked me to do an update tonight. I don't know about you all but I really enjoy it when she does it! She got her lab today. Not the result we were hoping for. She is still at about 42,000 platelets and needs 90-100 thousand. So, we will wait and try again on Thursday. We have been through this before with other issues so we know it will come when it is time. We would just ask that you pray specifically that her body will produce the platelets she needs to move on to her next round of chemo.
Obviously, the chemo is our weapon against the cancer. Jodie said she was told by another nurse that a lady who had topotecan had a tough time rebuilding her platelets also.
She continues to do pretty well otherwise. Still a little fatigued but she does a lot around the house, dinners, laundry etc. She is allowed to drive again which is nice for her.
The boys had their science projects due this week. Tanner did his on electromagnets and Hayden did his on blood cells and mom's blood cells. They both did a nice job.
Well, keep up the faith and prayers, we need them. Thanks again for all you do for us.
Matt & Jodie.
Thursday, March 3, 2005 11:22 PM CST I got my lab today and my platelets are on their way up at 40,000. Yeah!!!! We scheduled another lab for Monday to check my numbers, and also, with a lot of positive thinking, scheduled my chemo to start on Monday.
My red blood cells are still low, but I am feeling okay. I am not able to do everything I want, but I have been busy getting caught up on lots of things and spending my days with Katie. Matt can always tell that I am feeling better when he finds my large receipt from WalMart. Now that is what I call normal! =)
I got my wig on Tuesday. No big risks. I got the same one I had before. This time I left it really long. I don't know if I like it yet or not. I probably will go get it cut in the next few weeks. Maybe next time I am feeling better. It is always fun to have a little change.
Hope everyone has a great weekend! We will update again on Monday. Thank you for your thoughts and prayers.
Jodie
Tuesday, March 1, 2005 10:38 AM CST Sorry for the delay in the update! When I got home from my lab yesterday, I was so tired I took a nap, and then the day just seemed to slip away.
My lab results were not what we had hoped. My platelets had actually come down to 27,000 from 34,000 on Friday. We need them to be between 90,000 and 100,000 to start chemo. We will check again on Thursday. It is very frustrating, but this is what the doctors expected, because the Topetecan (one chemo drug) is very hard on the platelets.
My red blood cells were hanging in there. My H&H were 29 and 9. Not so great, but doable. Normal range for red blood cells is 35+, so I am anemic, but I guess you could say I am "used to it."??? That is probably why I needed that nap yesterday. My white blood cells were great at about 4.3 thousand.
I will keep thinking positive and praying that the numbers start turning in my favor. Hope everyone else does the same. We need to get going with this next round of chemo!!!
Jodie
Friday, February 25, 2005 1:05 AM CST FRIDAY UPDATE:
My platelets were at 34,000...going down, but not in a range for a transfusion. We need those platelets to be going up so I can start chemo. We will check again on Monday to see. Meanwhile I will be thinking and praying , "Platlets, Platlets, Platlets, Platlets..."
THURSDAY UPDATE:
Hello to All!
Things are going so much better the last two days that I have forgotten to let everyone know! After two days of on again off again (more on than off and sometimes more than I thought I could handle) pain, yesterday the pain subsided and last night I actually slept all night for the first night in over a week. When I woke up this morning Matt was coming out of the bathroom, and the first thing I said was, "I slept all night, Honey!!!" It was so funny to be so excited about such an ordinary thing. Well, I guess all you mothers (and I hope a few fathers!) out there know of what I speak!
I was even able to go to the Cub Scout Blue and Gold Banquet last night with the family. It was so great to be among friends and feel a part of a normal activity. It was a great time.
We have had so many people help us out this week. We have had dinner just dropped off and asked to put in our freezer for when we need it. We have had dinner delivered because we need it. We have had help cleaning the bathrooms again. We have had notes and e-mails and phone calls. We had people take the girls and the boys while I was in the hospital. On Saturday, one family "came up" with two extra tickets for a Mother Goose play at the University and took Katie and Emmy with them. They LOVED it! Then on Monday another family took Emmy and Katie downtown and all around and they got to play with their dog and snakes!! What a cool day. Tanner also was lucky enought to go and play with one of his favorite friends from church on Monday. We are always so grateful to those who help keep the kids lives normal when Mom is in the hospital. Thank you all for your love and concern. It is so nice to know how much support we have from friends and family. We have sooo many offers for help with the kids and errand runs and lots of "please let me help do anything." We are so thankful to know that when we need it we have so many who are willing to help!
Today was a great day. Katie and I just stayed home and organized a little here and played a little there, and we didn't have to go anywhere or have any labs, and Katie was home all day! We should all be thankful for small things.
Tomorrow I have to go in for a lab. I have a small bruise starting on my arm with a few red dots on it. I looks like small blood vessels breaking with bruising behind. This can be a sign that I have low platlets, but since I was just at the doctor yesterday and they were 41,000 I don't think they should be low. Just a precautionary thing. We want them to be going up because we cannot start chemo until they are in the 75,000 to 100,000 range. I have another lab scheduled for Monday to see if they are in that range. I am praying tonight that this bruise on my arm is some weird thing going on and that those little platlets are building and building in there.
We will update tomorrow to let you know the lab results.
One bit of sad news--I am losing my hair. It is coming out a little slower than last time, but it is becoming to "thin" in some spots, and I am afraid my vanity might be getting the better of me. I am going to have to make another trip to the wig shop. I guess one good thing is that it is really nice to just get up in the morning and PUT your hair on. It doesn't seem like I have had this hair long enough to get rid of it. I was so enjoying having my own hair.
Maybe I should have everone vote on a color of hair. What do you think? Blonde, brown, red, black? You know, I am not a risk taker so I probably will go with the same style as my old wig. It was different to have long hair. I guess you won't know until we post a picture on the site...
Jodie =)
Tuesday, February 22, 2005 11:21 PM CST I had hoped Jodie would feel well enough to update this but she has not. She came home on Monday night. She was so happy to be home. We had a nice family get together (with pizza and ice cream shakes, kids favorite) with Lowry's and Bailey's. It was a nice evening. Last night Jodie's pain returned in her legs and she was up most of the night trying to get it undercontrol. She finally did but she was very tired and drugged up. She does not like to feel that way at all.
Her low blood pressure continues to be of concern. It has improved some but is still very low. The doctors have ruled out an infection or drug side effect as the cause, leaving them only the tumor itself as the possible cause. They plan to give her IV fluids and attempt to get her ready for the next round of chemo as soon as possible to fight back.
We had a home health care nurse come in today to teach us how to use the IV pump. At this point we can handle her needs without a nurse but it is nice to know that there is that option available if we need it.
It is 8:30pm and Jodie is having more leg pain. It is the strangest thing. It does not seem to be caused by anything like walking or doing anything in particular. It as almost as if her body starts shooting a pain from her knees and ankles that just flares and will not go away. She says the pain is a 6 on a scale of 10, but it is the fact that it seems to be relentless that makes it so hard for her. SHe has to respond with large doses of pain medication to get it under control. Once it goes away...it is if it was never there (from my observations).
Because she is struggling to get a good nights sleep (and has not for a while) she still preferrs to not have visitors right now. But everyone who drops a note by email and or mail brings her a smile. Hopefully she will be feeling better soon. She misses and loves you all. She tells me often how much she has been blessed by so many people. Continue to pray for her to have some releif and control over her sittuation. She has an appointment Weds at 11:30 to see if she can continue the chemo..
Thank you....Matt.
Sunday, February 20, 2005 5:40 PM CST **UPDATE MONDAY NIGHT** JODIE CAME HOME!! SHE IS DOING PRETTY GOOD, STILL HAS TO BE CAREFULL ABOUT HER BLOOD PRESSURE BUT IS DOING BETTER. WE WILL ADD MORE LATER.
SUNDAY: I know a lot of you have been checking in to see how Jodie is doing. I have been waiting until I knew what was going on. Jodie has had some improvement with her resting blood pressure while she is lying down but it still drops when she stands and she gets very winded and light headed when she gets up for any reason. Are we worried. Yes, a little. We still do not know what is going on. But we have faith she will overcome this hurdle. Her blood counts are still low, so they are giving her more red blood cells and platelets today. She will not be coming home today. She was supposed to start her second round of chemo tomorrow but that will be on hold until she is ready. Sounds ironic doesn’t it? Wait until she feels better so she can be given something that will wear her body down again? All part of the plan I guess. Hopefully sometime in the next few days. She wanted me to tell you that she feels your love and support. She apologizes that she is not up for visits or phone calls but she simply can’t handle that right now.
What can you do? Many people ask me this question throughout the day. My answer is what you are doing. Your love and prayers sustain us a great deal. If you can, please leave a note on the website or by the email address at the bottom and I will print it out and take it to her. She loves those and they give her more strength than you can imagine. Just pretend that is your visit. She will not be able to respond to your message, but you know she loves you all.
The kids and I are doing fine. We miss our Jodie, and wish she was home with us, but know it will be soon. We are learning a new routine and appreciate all the offers for help. We feel like we need to learn to do this on our own for a while because it helps the kids to feel normal. I have learned a new respect for the washer and dryer, and have developed a special skill allowing me to manage laundry. What an amazing amount of clothes 6 people can produce in just one day! Thanks to all the families with kids our kids age who have done fun things with kids on weekends and school holidays. It helps them to have something to look forward to.
I will update as soon as I have more information. We love you all!
Friday, February 18, 2005 3:29 PM CST I just visited Jodie in the hospital this morning and her blood pressure has improved some to 100/60 which is still a little short of her normal 110/70. They plan to let her go home from the hospital on Sunday if she is doing better. She reports still feeling a little light headed when she sits up and does better laying down but not nearly as bad as Thursday and Friday. They are still not sure what is causing the low BP but their best guess is an infection. The antibiotics seem to be helping some.
She was thrilled to be moved to the other side of the hospital away from the LifeFlight chopper! She still is not quite up to visitors as she sleeps a large amount of the day. She sends her love and appreciates all the prayers and love you give to her and our family.
Matt.
Thursday, February 17, 2005 2:19 PM CST **UPDATE** Thursday night. Jodie was admitted to the hospital so they can keep an eye on her. Her blood pressure was very, very low (80/40), she is very low on energy and stamina. So, she got her least favorite room back right above the helicopter pad that comes and goes several times a day and night. She feels bad to complain though since this is her first admit to this hospital in over a year. They expect her to spend a few days there while she gets some rest and care. More when I have it. **SHE NEEDS TO REST SO NO VISITOR OR PHONE CALLS PLEASE**
Matt.
**UPDATE** Jodie has been having a low grade fever shortness of breath and feeling light headed and dizzy when she stands up and walks across the room. I took her into the doctors today and she has very low blood pressure. They think it is a result of an infection so they have kept her in the office all day and are giving her IV fluids and antibiotics. They may admit her to the hospital tonight if she does not improve. I will update more later. Thanks to those who continually watch Katie during the day.
Matt
Monday, February 14, 2005 11:20 PM CST ** Happy Valentines Day!!**Sorry it has been a few days. Jodie had a better weekend. She has learned what combination of pain meds she needs to keep the pain under control. She benefited from the blood transfusion on Friday, but needs to have some platlets tomorrow. She has low counts, and more blood products will help a great deal. We had a wonderful pre-valentines dinner on Saturday evening. Some friends of ours watched our kids and made us a fabulous crab dinner at home. We enjoyed the silence as we watched a movie together. What a remarkable evening!
Today we all exchanged little gifts to each other. It is wonderful to see how much thought and love the kids put into their cards.
We continue to be concerned about the two families linked below and pray for their families. We have found strength in the fact that our familes and friends rally around theirs and vice versa. Their truly is strength in numbers!
Matt & Jodie.
Friday, February 11, 2005 9:59 PM CST Matt had updated today, but I thought the events of the last two days needed a little more detail! =) Maybe it is all those fresh red blood cells running through my veins!!
Wednesday night was an awful night for Matt and me. I have been getting pain in my right knee and ankle at night and usually it can be taken care of with pretty minor pain meds, but Wednesday night was quite scary because it would not resolve and we actually had to call the doctor at 1 a.m. to see how many pain meds would constitute an overdose! =) Not really, but we were trying to get the pain stopped and it wasn't working. Luckily we took a few and it did resolve without a trip to the emergency room. We were also worried that maybe this was something that would not resolve and that we would have to figure out how to live with, but what a blessing that it did and we have some stronger medication in case it happens with such severity again.
On Thursday we also had another lab because of my fatigue and shortness of breath and found that I did indeed need a red blood cell transfusion. Well, the doctors office did a type and cross match (does that sound like ER?) to make sure you get the right blood, but when I got to the hospital an hour later to get the blood, they had not taken the labs to the blood bank and so I sat and waited another hour and then the numbers where mixed up on the label (that is a very big no no when it comes to blood!) and so after waiting and wasting a few hours at the hospital, I had to go home and get my blood today. One fun thing that happened, though, is that there are two massage therapists who volunteer a few hours a week at the Infusion Center at the hospital (That is where I get my blood transfusions.) and so while I was waiting for my blood yesterday, I got a wonderful hand massage. What a great blessing! She asked me if I wanted a foot massage, and I think she was a little taken aback by my , "Oh, No Thank You!" It would have felt so yucky with these numb feet I have. The massage therapists have actually taken special classes for cancer patients and just give of their time to make others feel better. There is so much good in this world. We try to share a few things that people do for us, but we only barely touch the surface of the way people touch our lives. Every kind word, phone call, e-mail, guestbook entry, card, etc... make us know that we have so much love and support behind us and it brightens our days and nights. People are amazing.
Today started out at 9:30 a.m. for blood at the hospital and I got home at 3:30 p.m. What a long, boring day. I was able to watch a DVD during the transfusion. That was fun and as always I love those red blood cells! I can actually hold my head up to type this journal entry!!
We are having a family night tonight--watching Shark Tale and enjoying some snacks from an amazing little family that we don't even know but wanted us to have a night together. People are amazing! The kids are especially excited about the FunDips. That is a very special and fun treat for the kids and they are SO EXCITED!
One last thing, we have friends in Tennessee who are going through a very difficult time right now. Rhonda, the mom, went through a bone marrow transplant one year ago, like me, and has been getting through the year with hope and a bit of normalcy. They have four children just like us--two boys, two girls. We have so much in common. They have received some bad news as we have lately, and we would like to ask you for extra prayers on their behalf. I will add a link to their website if you care to visit and leave a message. They have a tremendous support in Tennessee, but we worry about them so much we want to do anything we can. Please pray for them and their family as we know how hard it is to go through setbacks. Without faith we have nothing, and they are so faithful! But times like these hard.
Jodie
Friday, February 11, 2005 5:05 AM CST Jodie has really had a tough couple of days with pain in her legs but we have been able to get that under control by increasing her pain meds a little. Her blood counts got pretty low the last two days so she is getting two units of blood as we speak. She always loves that! Thanks to all for your love and words of encouragement.
Wednesday, February 9, 2005 5:05 AM CST While doing my last (yeah!) chemo treatment today (Tuesday), one of the nurses came up to me and quietly said, "I just wanted you to know that your bone marrow biopsy was normal." I had no idea the impact those words would have on me. It seemed to bring this whole thing down to a 1.5 c.m. x .5 c.m. tiny tumor that is SO beatable. I feel a huge sense of relief at having been given that knowledge today. Today was a hard day emotionally for me, and I feel like that news was saved for that very moment to give me a special blessing from heaven! Good news has been hard to come by in the last month, and this is really good news!!
My counts are indeed on their way down. My red blood cell level is 30 and 10. Low normal is 35 and around 12. Not enough for a t
ransfusion (yeah!) but enough for a shot to help boost them in the next few weeks. It probably won't do much for this round of chemo, but the sooner we get it in my body, maybe is will help for the next round. My platlets were at about 90,000 (bad for you, but good for me) and I neglected to get my white blood cell count. I go in tomorrow for another lab draw to check the levels again, and then we will play it by ear from there.
I do get a little light headed and short of breath and muscle fatigue, but nothing compared to last time. I am sure it will continue to get a little worse, but my goal has been to cook dinner for my family each night, and with a little help from my mom tonight, I was still able to do that! It makes me feel like I am still pulling some weight around here. The kids have been amazing in helping out--Not to mention the way my amazing husband has been keeping up on the laundry and running the kids from here to there without complaint. I am so blessed to have them!
A sister from church came by today to clean our bathrooms. That was a hard thing for me. Probably one of the hardest things I have had to do. For one thing, they hadn't been cleaned in quite awhile becaue of the stiffness in my legs, so they were not a pretty sight, but the hearder part was giving up another part of "normal" life, wondering what my "normal" will be from now on, BUT I cannot tell you how nice it was to be in a clean bathroom tonight and know that my children were also enjoying the same luxury.
Another sister from church ran an errand for us to pick up tights for Katie and Emmy, who have been having a difficult time fitting into their old tights for dance class and church. What a blessing to have someone do such a simple thing that will take such a burden off of Matt! Not only did she get tights, but they were good ones marked down on clearance! Wow! I couldn't have done that good!
Thank you for all your continued prayers and thoughts. They get us through each day.
Jodie
Tues Feb 7th. 2005 UPDATE: Jodie has her 5th and final treatment of this cycle. She has been doing pretty well although she is starting to get low on energy. No neausea so far. She has enjoyed the notes and words of kindness and reads them often. Will update later this week.
Friday, February 4, 2005 11:13 PM CSTI started out my day at the Heart Center at Providence Hospital at 8:30 a.m. for the insertion of my new central line. My procedure was supposed to be at 9:30 a.m. but did not happen until 12:00 noon. I just made it out of the procedure in time to get upstairs to my oncologists office for my first round of chemo at 1:30 p.m.! A lot of hurry up and wait and then get there quick! =) Everything went very smoothly, and I am feeling no real ill effects from the chemo tonight! My left side is a little sore from the catheter insertion, but that will be the end of the IV's and blood draw pokes! Woa, Woa! It is great to be home with the family instead of in a hospital room with nothing to do. There are a lot of blessings to be counted today. I am visualizing the chemo driving its way to that tumor and blasting it out of my spinal cord!!! I am full of faith and hope!
My chemo continues tomorrow afternoon and on until Tuesday--3 hours a day. Thank you to everyone who has helped with Katie and other arrangements. I appreciate so much the mothers who are doing Katie's preschool and letting her continue in her normal schedule even if her mom is unable to. What would I do without you? What would she do without you?
Thank you for your continued prayers for me and my family! We love you all and are grateful for your love and concern!
Jodie
Thursday, February 3, 2005 4:02 PM CST UPDATE: Jodie had her biopsy. It went very well. She was pleased to be unaware of all that was going on. She rested yesterday. They have moved her chemo date up a day and will place the line and begin chemo on Friday. She is doing well, the numbness has increased a little but she is doing well.
Will update more in a few days!
Matt & Jodie
Tuesday, February 1, 2005 0:06 AM CST
Hello everyone! First of all, let us both say how thankful we are for what we experienced yesterday. So many family and friends gave up food and water for 24 hours and reminded their Father in Heaven each time they were hungry or wanted something to drink that they were doing it for Jodie and our family in petition for a miracle. It was very humbling and boosted our faith even more, giving us a huge lift of confidence as we press on for the difficult road ahead. We love you all and feel strength from your love and prayers in our behalf.
Today Jodie and I met with Dr. Anderson, our oncologist in Anchorage. She helped us plan out the rest of the week and the treatments ahead. Jodie has a CT tomorrow to ensure we are only dealing with the spinal cord tumor. She has some rattle in her lungs from a cough and Dr. Anderson also put her on antibiotics to clear that up. She has a bone marrow biopsy on Wednesday morning to determine the state of her bone marrow since the transplant and make sure we don’t give it too much chemo too quickly. Jodie was very pleased to learn she can do this with sedation—not something anyone would look forward to without sedation! That in itself is a small miracle because up until now, we have not been able to have sedation for bone marrow in Anchorage.
Sometime between now and Saturday she needs to have some sort of central line put in through which they can administer the chemo. We are shooting to start the chemo on Saturday if everything goes off without a hitch. Each cycle with consist of two chemotherapy drugs—Cytoxan and Topotecan. Jodie had Cytoxan in her last chemotherapy, but the levels were much higher. She has never had the Topotecan, and so we are excited to see what kind of Neuroblastoma cancer it can kick!!! The drugs will be administered for five days every three weeks. They are not setting an end to the cycles. This is where the miracle we are looking for should happen!! An end will be the miracle. We will watch symptoms and run scans to check the status of the tumor. The first scan will probably be in six weeks. The nice thing this time is that this will be outpatient chemo—no unnecessary hospital stays and more time at home with the family! She has been told to expect the side effects to be a little less severe than last year—still fatigue but not as much nausea or mouth sores. She may even avoid loosing her hair, and that makes her smile!
We appreciate your offers to help in so many ways. We are, once again, going into this blind and will evaluate our needs for help often. Hopefully we will be able to maintain a pretty normal schedule for the kids but we will let you know if we have special needs. Thank you again for your love and prayers! May you be blessed for your service! We pray you are able to feel as blessed in the midst of your trials as we have through this.
Tuesday, February 1, 2005 0:06 AM CST Hello everyone! First of all, let us both say how thankful we are for what we experienced yesterday. So many family and friends gave up food and water for 24 hours and reminded their Father in Heaven each time they were hungry or wanted something to drink that they were doing it for Jodie and our family in petition for a miracle. It was very humbling and boosted our faith even more, giving us a huge lift of confidence as we press on for the difficult road ahead. We love you all and feel strength from your love and prayers in our behalf.
Today Jodie and I met with Dr. Anderson, our oncologist in Anchorage. She helped us plan out the rest of the week and the treatments ahead. Jodie has a CT tomorrow to ensure we are only dealing with the spinal cord tumor. She has some rattle in her lungs from a cough and Dr. Anderson also put her on antibiotics to clear that up. She has a bone marrow biopsy on Wednesday morning to determine the state of her bone marrow since the transplant and make sure we don’t give it too much chemo too quickly. Jodie was very pleased to learn she can do this with sedation—not something anyone would look forward to without sedation! That in itself is a small miracle because up until now, we have not been able to have sedation for bone marrow in Anchorage.
Sometime between now and Saturday she needs to have some sort of central line put in through which they can administer the chemo. We are shooting to start the chemo on Saturday if everything goes off without a hitch. Each cycle with consist of two chemotherapy drugs—Cytoxan and Topotecan. Jodie had Cytoxan in her last chemotherapy, but the levels were much higher. She has never had the Topotecan, and so we are excited to see what kind of Neuroblastoma cancer it can kick!!! The drugs will be administered for five days every three weeks. They are not setting an end to the cycles. This is where the miracle we are looking for should happen!! An end will be the miracle. We will watch symptoms and run scans to check the status of the tumor. The first scan will probably be in six weeks. The nice thing this time is that this will be outpatient chemo—no unnecessary hospital stays and more time at home with the family! She has been told to expect the side effects to be a little less severe than last year—still fatigue but not as much nausea or mouth sores. She may even avoid loosing her hair, and that makes her smile!
We appreciate your offers to help in so many ways. We are, once again, going into this blind and will evaluate our needs for help often. Hopefully we will be able to maintain a pretty normal schedule for the kids but we will let you know if we have special needs. Thank you again for your love and prayers! May you be blessed for your service! We pray you are able to feel as blessed in the midst of your trials as we have through this.
Wednesday, January 26, 2005 6:47 PM CST Thursday Night: (Matt) Well, we are home! We flew back this afternoon and are thrilled to be at home with the kids. Jodie's smile is never bigger than with the kids. We have an appointment on Monday with our Anchorage Oncologist to finalize the plan for the chemo. We invite Everyone to please join us in fasting and prayer this Sunday that the chemo will do it's job and will help Jodie fight back! We love you all. We are optimistic and need your support. Jodie really draws strength from the notes you leave in the guestbook and email. Thank you!
Wednesday: (Jodie)In the last three days we have met or consulted with four different doctors about my current situation.
We have found out that the tumor is right in the middle of the spinal cord at T7. It is still small but is causing the numbness in my legs which will continue to worsen as the tumor grows. Because the tumor is in the center of the cord and because I have already had so much radiation to my spine, more radiation is not an option. The spinal cord can only take a certain amount of radiation in one lifetime without causing paralysis, and it seems as mine is about at its limit. If it was out away from the spinal cord, there might be other options, but it is smack dab in the center! So radiation, for now, is ruled out.
That leaves us only with the choice of more chemotherapy, not something we are looking forward to but at least it is another option. The doctors also want to have another bone marrow biopsy to make sure it has not spread again to my bone marrow. Hopefully we can come home to Anchorage for that so we can be with the kids again soon. We miss them so much! Our hope and prayer is that the chemo will be able to get rid of the tumor in my spine.
Please continue to pray for us and our family, especially the kids right now. They have so much that they have to go through at such a young age. Our faith continues to guide us through and without it this situation would be unbearable. Your thoughts and prayers are so much appreciated at this time.
Jodie and Matt
Friday, January 21, 2005 12:56 AM CST Monday UPDATE: We have an appointment to meet with the radiation oncologist and the neuro oncologist on Wednesday afternoon. It is very frustrating and scary to be sitting here in Seattle not knowing what is going to come of this and not being able to do anything or be with the kids. I just keep telling myself that faith can't exist with fear. Thanks to everyone for your prayers. This is a very difficult time and we feel them buoying us up!!
Jodie
UPDATE: Sunday Night: Still waiting...
UPDATE: Friday Night: They let Jodie go home from the hospital and we are at the hotel now. Still have not heard from the doctors to see what their plan will be so we are just waiting..
Friday Morning:
By now many of you have heard Jodie has gotten some difficult news. It appears she has a new outbreak of cancer in her spinal cord. We were asked to come to Seattle right away so the doctors can develop a treatment plan. We flew down on Thursday the 20th, and checked into the Univ. of Wash hospital at 2:00AM to be examined.
Jodie has had increasing numbness in both legs over the last two weeks. We became concerned and the Dr. in Anchorage ordered an MRI. They detected a small 1.5cm X 55mm spot in the spinal cord that appears to metestatic cancer.Obviously if left untreated that would cause serious problems. (At one point we thought the mass was 8" long so this is better news than we thought).
As of this morning, the doctors are examining her films, and may let us go home from the hospital and see these doctors as an outpatient. They think they have rulled out any short term risks but it looks like we will be here for a minimum of a few days, possibly longer if they decide to do the treatments here.
This is all we know right now. We know we have many people behind us and we know we can make it through this.
I will update as soon as I have more info.
Love Matt & Jodie.
Thursday, January 6, 2005 3:21 PM CST Well, 2005 is upon us and we are ready for it! It closes out a very difficult 2004. We had a wonderful holiday season. The kids really enjoyed Christmas morning, and dented many of Jodie’s pots and pans ringing in New Year’s Eve. I think we even broke a wooden spoon. We just enjoyed having Jodie healthy and busy. We enjoyed getting Christmas cards and letters from friends and family.
We have had close friends (Kent Metcalf and Mike Miller) that have really been having a tough time the last couple of months. We find it difficult to see anyone go through what cancer can put people through. Yet we marvel at how faith and support of family and friends can rally behind people to help them. Continue to pray for both of them and their families as their road has been much harder in 2004 than ours. They need it.
Jodie recently had another PET scan which showed normal. This is the scan that requires her to fast for 24 hours, followed by drinking a large quantity of radioactive sugar. Because cancer cells are over active, the sugar goes to cancer cells first and causes the clusters to glow if they are active. Jodie did not have any areas of uptake which means she is doing great.
We will be going to Seattle in February for her one year post-transplant check up.
Have a great new year everyone! Check back in a few weeks for another update.
The Clarks.
Friday, December 24, 2004 6:47 PM CST Merry Christmas! The best gift Jodie and I have received this year is captured best in this photo……..Thank you all for helping make this possible through your words of faith, prayer and encouragement.
Love Matt and Jodie
Saturday, December 11, 2004 2:38 PM CST Happy Saturday to you all!
Jodie is out doing some shopping...guess what for? SNOW PANTS! We are all going sledding today which will be Jodie's first time in a long time. The kids are really looking forward to it. We have had a great few weeks since Thanksgiving and have recently decorated our tree and house and are now officially in the Christmas spirit. We will try and do a family photo in front of our tree. One of the really fun things we enjoy about putting up the tree (especially the kids) is putting up ornaments that were given to them each Christmas by grandmas and such. This year, we had some very special ornaments...Some of them came from people who did the 12 days of Christmas for us last year. One very special to me is an ornament made out of a VIBRAX fishing lure. Anyone who knows me well knows that is my lure of choice for salmon that has always done well for me. The license plate on my Suburban is VIBRAX. The thought that went into that ornament makes me very thankful for the friends we have.
We also have a box of ornaments decorated by the employees of Spenard Builders Supply (SBS) that have each of our names on them. I really think they were the kid’s favorite this year. When we drive down the road, and see an SBS sign our kids will spontaneously all start chanting SBS, SBS, SBS, SBS. Those people truly made a lasting impact on our family.
Jodie is doing well and will be off of her last cycle of ACUTANE soon completing all of her treatments.
We are praying for those of you having difficult times.
Love Matt and Jodie.
Wednesday, November 24, 2004 10:51 AM CST What a great Thanksgiving we had here in Alaska! It is amazing to think that I thought I had a wonderful Thanksgiving last year. I was so grateful to be with my family and not in the hospital. This year, it brought my family and me to tears many times as we thought about those memories from last year. I had MUCH to be thankful for this year!
I was also able to go shopping the day after Thanksgiving with my sister-in-law, Kim. I think Kim said it best when she said she wished we could have had a video camera to record all the fun we had! We tried to spread the Christmas cheer to those who didn't seem to be having as much fun as we were. I don't know if I can imagine a better time than 50 percent off of this and 40 percent off of that!! What a shopper's dream, and then to remember that there was no way I could have done that last year. It reminds me how muched others blessed our lives last year during the holidays. (I think it was employees from SBS out there last year battling the crowds for our family! :)) There were so many that helped to give our family amazing Christmas memories during such a difficult time in our lives. There can never be enough words to say thank you, and so the only thing we can do is "pass it forward." And we, as a family, plan to do just that!
Our thoughts and prayers are with my sister, Susan, tonight (She just went through a major surgery) and two other friends who are battling cancer. We have no question about the power of prayer and know that even when we are far away, we can bless them through our prayers.
Love to all!
Jodie and Matt
Thursday, November 18, 2004 3:42 PM CST Jodie has been out of state this week attending the funeral of her uncle. I want to share something significant that happened last week. Her side of the family (Lowry's) has done so much to help and pray for Jodie, and then in less than a week her healthy active uncle was diagnosed and taken by a brain anurism. He was loved so much by his family and people traveled from all over the country to attend his funeral. I know this will sound cliche but think about this...It just shows how important our family relationships are and how we must treat each other as if we are all terminally ill...because we are. No one knows how, when or why a loved one will pass away...but if they are here now, we must enjoy and learn from them while we have the chance.
Jodie and I have had so much love and concern poured out on us that I am humbled by what happened in Jodie's family. We know that there is a way for family relationships to extend beyond the grave, and this life is more than about what we do for a living, doing home improvement projects...attending this sporting event or that one..holding this position or organizing some event or meeting...it is about family. We send our love to the Lowrys and know their example has taught so many people about the importance of family...
Love the Clarks in AK!
Tuesday, October 26, 2004 5:28 PM CDT UPDATE: 11/08/04. Jodie is almost finished with her 2nd to last cycle of ACUTANE. She has one more two week cycle in about three weeks and that will complete all of her treatment. She is doing well, busy as ever. We are in the birthday season right now, Mine in Sept, Katie in Oct, Tanner in Nov, Hayden and Jodie in Dec. I think Halloween, Thanksgiving, and Christmas fall within there somewhere! It seems there is always something to do right? We are enjoying the return of winter in AK. Cold, dark, snow, and beauty! Hoping blessings come to all who read this! Love Matt & Jodie.
10/30/04: Happy Halloween (almost). We carved some pumpkins last night and let me say they each have a different personality. Emmy and Katie's have a smile and hearts and flowers while Tanner and Hayden's look as scary as possible. It was sure nice to spend a little time doing something like that as a family. Last year at this time Jodie was in no condition to participate with anything like this. Somehow (because of Jean and Charlie and so many others) we were able to throw some sort of halloween together. We were in Seattle collecting stem cells (trick or treat) for halloween and did not get to see the kids in their costumes.
Jodie continues to do well, holding her own. We are starting to get little bits of snow now and again so soon we will be burried. I switched the van and my work truck over to studded tires and will do so soon with the Suburban. It is kind of like a ritual. Anyway, love to all, thanks for checking in.
Saturday, October 9, 2004 12:08 AM CDT UPDATE: WEDNESDAY 10/20/04. Jodie said that her doctor told her the PET scan was negative for active cells. That means no active growing cancer cells. Good news!
UPDATE: MONDAY 10/18/04 Still waiting on the PET scan results. Everything else is fine. Will update later this week when I know more.
Matt.
Hi everyone, hope everyone had a good couple of weeks. We have just been busy with our routine. I have been busy with work and traveling a bit. Jodie has been keeping the kids on track with their homework and around the house.
Tanner, (our 10 year old son) gave her a little scare. He had a resting heart rate of 219 bpm one night while sitting on the couch. Jodie called 911 at the nurses request. (I was out of town of course) They were able to document his heart rate on the ECG. Eventually, with some drugs they were able to get it back down to normal. We met with a pediatric cardiologist and she told us he has a condition called SVT. It is a common, treatable and non-life threatening defect that has an extra nerve path in the heart. It causes Tanner's heart to beat out of sync and therefore faster than nomal sometimes. He has to take beta blockers for the rest of his life or have a small surgery to correct it. We will look at that option later. In the meantime he has no activity restrictions so that is good. What a blessing to have the whole episode on ECG. Now we know what it is and how to deal with it.
Jodie had an MRI scan last week and we found out the results that her tumors on the spine are "stable and unchanged" which is good news. She has a PET scan on Thursday that will hopefully show the same thing.
Hope you all have a good week! Thanks for checking in. We love you all!
Matt.
Monday, September 27, 2004 11:11 AM CDT UPDATE: MONDAY 09/27/04
We had our first snow of the year on Saturday (4") which is an early snowfall record. We were not quite ready for winter yet. It almost seemed like we never had a fall! All of our trees still have leaves. We are just not ready to trade our lawn mower in for our snowblower!
Jodie had another good week. She is taking on way to much and I am still having trouble keeping her from over doing it! You try telling her to slow down! The funny thing is she agrees with me but everytime I turn around she is rushing off here or there or staying up late working on projects (ALL THINGS THAT SHE LOVES TO DO!!!). Anyway her health is holding steady and we are plugging along. Glad you all enjoyed the picture of Jodie's new Hair do!
Matt.
MONDAY 9/20/04 Matt said I had to update the webpage today, and I realized I haven't done that in so long! I have realized in the last few weeks that one of the blessings of cancer is that, for the most part, I was able to devote all my time and attention, when I was feeling good, to my family. Now that normal life is back in full swing it is once again hard to fit everything in to 24 hours in a day. There are so many GOOD ways I want to spend my time that it is hard to figure out what is the best of the good. I also have a bit of a nag at the back of my brain that says I need to do things while I am well which makes giving up some activities even harder. But I do know that my family and children come first and that is a good place to start in determining where my time is spent.
To top off this busy time, my red blood cells have been dropping and causing me a lot of fatigue and tiredness. Thankfully, I got a shot on Friday that should help that--now I am counting the minutes until it kicks in! (They said that could be three weeks of minutes:)!)
School is back in full swing. I hope to be able to start working in the kids classrooms in the next few weeks. Four friends and I are doing a coop preschool in our homes for our children. This week is my first week to teach and I am looking forward to being a part of Katie's first preschool year. I am participating in our women's group at church and really enjoying being able to serve in some small way to pay back the wonderful acts of kindness and generosity that we have received throughout the last year. It was so hard for me to see so many people doing so much for my family and not being able to do anything in return. So now I am ready and willing to love and serve as many others as I can!
We are, as always, thankful for your friendship and love.
Jodie
Sunday, September 12, 2004 10:58 PM CDT Matt said I had to update the webpage today, and I realized I haven't done that in so long! I have realized in the last few weeks that one of the blessings of cancer is that, for the most part, I was able to devote all my time and attention, when I was feeling good, to my family. Now that normal life is back in full swing it is once again hard to fit everything in to 24 hours in a day. There are so many GOOD ways I want to spend my time that it is hard to figure out what is the best of the good. I also have a bit of a nag at the back of my brain that says I need to do things while I am well which makes giving up some activities even harder. But I do know that my family and children come first and that is a good place to start in determining where my time is spent.
To top off this busy time, my red blood cells have been dropping and causing me a lot of fatigue and tiredness. Thankfully, I got a shot on Friday that should help that--now I am counting the minutes until it kicks in! (They said that could be three weeks of minutes:)!)
School is back in full swing. I hope to be able to start working in the kids classrooms in the next few weeks. Four friends and I are doing a coop preschool in our homes for our children. This week is my first week to teach and I am looking forward to being a part of Katie's first preschool year. I am participating in our women's group at church and really enjoying being able to serve in some small way to pay back the wonderful acts of kindness and generosity that we have received throughout the last year. It was so hard for me to see so many people doing so much for my family and not being able to do anything in return. So now I am ready and willing to love and serve as many others as I can!
We are, as always, thankful for your friendship and love.
Jodie
Thursday, September 2, 2004 11:28 AM CDT We have had a great week. My brother Jared and his family have been visiting with us this week. It is there first time to Alaska and so we have been taking them to see our beautiful state. It is so great to see Jodie out having fun.
On one day We went fishing on the 20 mile river. Another day we went to Whittier in Prince William Sound to see Blackstone glacier, and all the beautiful drives in between. Today we were planning on going to the Alaska State Fair but it is raining cats....and...mice(with dogs forcasted later in the day).
****SO HERE IS A NEW PICTURE OF OUR FAMILY, AND IF YOU CLICK ON SEE MORE PHOTOS YOU WILL SEE JODIE WITH HER NEW HAIR*****
I can not get her to pose for one so I had to sneak one with the kids.
Her health is holding strong, good blood counts and energy.
We love you all. Thanks for checking in and for thinking of us even though the crisis has passed.
Love Matt & Jodie.
Thursday, August 26, 2004 12:00 AM CDT Sorry it has been a while since I have updated. Jodie and I have been busy which is really good right? After what seems like months of traveling (weeks really) I stayed home for the last two weeks and got caught up on paperwork and chores around the house. This week my brother Jared comes so I will taking some leave which should be fun.
Jodie is sporting her new hairdoo and we will post pictures soon. She got it cut and styled, and highlighted and she looks beautiful. It is curly so it looks like she even got a perm but it is all natural baby!
She has kind of hit a plateau the last few weeks. She is able to do almost everything she used to do, sometimes with a little pain involved, and usually exhausted by the end of the day, but she is greatful to have this quality of life. She sometimes gets winded climbing the stairs but overall she is still doing really well. What a blessing that modern medicene is.
Thank you all, will ad more next week.
Monday, August 16, 2004 12:26 AM CDT Hello everyone, Jodie is still doing really well, she is in her first week of her second cycle of Acutane and has started to dry out again. Her skin gets very dry and she must constantly use vaseline on her face and lips. Herenergy level is great and pain level is tolerable.
I worked in Homer, AK last week and she and the kids came down for a few days. We had a great time. We took our little boat out for a picnic and just had lots of fun.
We are just trying to enjoy our last few weeks of summer!
Thanks to all who continue to check the site and pray for Jodie's recovery.
Matt.
Monday, August 2, 2004 11:50 AM CDT Wow, this once a week thing feels like....where do I start? Jodie continues to do well, she has been off the ACUTANE for a week now and her dry skin has improved quite a bit. She still has tons of energy and is headed out this morning to paint a friend's bathroom so that is evidence of her crime!
She has been struggling a bit though with soreness in her back that shoots pain that makes her gasp sometimes. We are not sure whether it is from the surgery, old cancer areas or new or what. But it causes her to need pain medicine to keep it under control. We will be asking the doctor about it soon but it may just be residual pain from nerves involved in her surgery and something she will always have to deal with.
Our life continues to be busy with lots of fun summer things. The kids just finished swimming lessons, just lots of other little things going on.
I have been working out of town for at least 3-4 days each week. I travel to some of the most beautiful parts of Alaska to check on fishermen...making sure they keep the rules. What a great job!
We still remark often how different this summer is than last. We have lots of challenges ahead but are so greatful for the faith building experiences we have undergone. We are still so thankful for all of you and hope you are enjoying your summer as much as we are. More next Sunday.
Matt.
Monday, July 26, 2004 12:09 AM CDT Jodie finishes her first two week cycle of ACUTANE today. She has done really well with it. As long as she has lotion or vaseline around she does great. She has to stay out of the sun but other than that it didn't seem to affect her much. What a relief to me!
We spent the last week preparing for a 24th of July pioneer picnic (a Utah State holiday celebrating the mormon pioneers setteling the Salt Lake Valley on July 24, 1847). Jodie helped plan the whole thing which is what she loves to do. We had sack races, three legged races, stick pull, stick ball, sling shot shooting, and all kinds of fun things for the kids to do. It was just a great weekend.
We are finally getting some rain to help with the fires and dry grass. We have enjoyed the sunshine though!
Jodie has been hauling the kids back and forth to swim lessons each day. The kids are doing really well and she enjoys doing things that mom's do!
Matt & Jodie!
Monday, July 19, 2004 0:44 AM CDT Jodie has completed her first week of Acutane (acne drug hoped to help kill remaining cancer cells) without too much trouble. She has really dry lips and has to put vaseline on her face and lips to keep them moist. She has not let it slow her down one bit. She just has a bit more of a GLOW on her face than before if that is possible. She capped the week off by going to the Brad Paisley concert with a couple of her girlfriends on Saturday night. I thought I would be called down to the police station to bail them out but they made it home without incident and they had a great time! I think they must have been screaming their lungs out because Jodie's voice is gone.
I spent a few days in Seward last week for work and Jodie and the kids came down and stayed a night in the hotel with me. They love that. We went to a beautiful glacier that we will try and post on the website soon.
As you can see, all is well and we are trying to live our life as normally as we can. Thank you all for helping us get through the tough times so we could get to the good times we have had this summer!
Love the Clarks.
Thursday, July 8, 2004 10:50 AM CDT UPDATE: SUNDAY
Jodie started her ACUTANE today! This will be the first day of the six months that she has to take the pills (2 weeks on and 2 weeks off) so we are glad to start this last part of the treatment that has been delayed for so long. We had another beautiful day and went to the BEAR PAW FESTIVAL which is a town fair in Eagle River, AK. The kids enjoyed the rides, games, magic show and the slippery salmon relays. Emmy and Katie enjoyed a pony ride! We had a great day.
Love you all.
THURSDAY:
Well some news finally! Jodie had her central line pulled. She has had that in for almost a year in August. That line has saved the day, it allowed all of the blood draws and transfusions to go through there rather than having an IV poked into her arm. It has also delivered all of the chemo drugs into her body. So although Jodie is glad to have it taken out, we recognize what a lifeline it has truly been.
Still no word on the ACUTANE. She is still waiting on that stuff.
I had a great weekend in Valdez checking halibut fisherman and am glad to be back. Thanks for checking in and your continued support.
Matt & Jodie
Friday, July 2, 2004 11:46 AM CDT More Delays. Apparently the ACUTANE is known to cause depression so the mnfct. makes you sign a waiver or something but whatever it was Jodie is delayed again until After the 4th. Oh well, she doesn't seem to mind to much...
Jodie's dad is visiting from Colorado, I am working in Valdez over the 4th weekend so I will be gone.
We said goodbye to some close friends this week with a party for the McArthur's. They have meant so much to us and have really helped get us through this. They are moving to Hawaii so don't feel to bad for them!
Jodie continues to do well, and has about a 1/2 inch of DARK BROWN HAIR! Pictures soon I hope.
Have a great weekend everybody!
Matt & Jodie
Sunday, June 27, 2004 8:02 PM CDT Sundays are a good time for us to catch up on things. We had a long weekend staying at a cabin on a lake. (Some friends of ours have one). We spent Thursday, Friday and Saturday up there for our first family vacation since all of this started. It was nice because Jodie was feeling good and the kids have a blast. We swam, and fished and stayed up late. It was just a great weekend. We are all really tired from it all.
Jodie starts her ACUTANE tomorrow. She is not looking forwad to it but...on to the next phase.
Thanks for staying tuned in...
Love to you all!
Matt & Jodie.
Thursday, June 17, 2004 11:30 AM CDT Well, I have been waiting to post news about Jodie's treatments. She is feeling so good I think she is avoiding them. The doctor has yet to start her on the ACUTANE, and she still has not gotten that line pulled. I think it it should happen this week but...for now she is just enjoying feeling a little better. She told me that yesterday she cleaned the house, did a huge grocery run, and she still was not tired. (She was a little sore though).
I have been working and fishing. So far I have caught 3 of my 5 allowed King Salmon, looking forward to cathing those last two this weekend. Check the Photo's part of this page and I will post one of the big catch!
We will post more later.
Wednesday, June 9, 2004 1:32 PM CDT **UPDATE SUNDAY**
Jodie is doing about the same, feeling pretty good most of the time, having a little pain now and then in her back area. She is supposed to start the ACUTANE on Tuesday. She has had some low platlet counts (residual from the radiation)so they had delayed that a little. We enjoyed the weekend with the kids, took them to Kids Fishing day with (sponsored by U.S. Forest Service, lots of games, t-shirts for the kids etc, the kids love it). I will be out of town off and on this whole week. We love you all and thank you for your faith and prayers.
Matt.
PLEASE KEEP KENT AND LAURA METCALF IN YOUR PRAYERS! THEY ARE MAKING SOME TOUGH DECISIONS RIGHT NOW AND DIVINE HELP IS ALWAYS NEEDED AT THOSE TIMES. CLICK ON THE LINK TO THEIR WEBSITE BELOW FOR MORE INFORMATION.
**TUESDAY NIGHT** Jodie and I had the appointment today, we did not learn much. We found out that the local doctor sent the scans down to Seattle to be looked out down there. Jodie was not able to have her line pulled due to a problem with the lab. So basically, today was just another dry run. She got her perscription to start the ACUTATE but we have to wait until we get the go ahead from the Doc after her lab results are in.
**MONDAY:Sorry it has been a while. We tried to do an update over the weekend and were not able to. I think the site may have been down or something.
We got the results of Jodie's scans back. It was not the news we were hoping for. The MRI showed that the tumor lesions on Jodie's spine have not changed (we were hoping the radiation and chemotherapy would cause them to shrink or go away completely). The nuclear PET SCAN was negative meaning there are no new areas of growth or hot spots glowing where cancer is active. That is good news.
We meet with the Doctor tomorrow to discuss the above results and learn more about what if anything this changes or means. We think she will tell us that we just need to continue on with the course of treatment which finishes with the 6 months of ACUTANE pills. These pills are supposed to cause the cancer cells to mature (I think that means complete their life cycle rather than slowly growing into tumors).
We want to stress that there is no change to Jodie's daily life, she is feeling really good now and there are no life threatening problems. It just means that we are not through the woods yet.
We will update on Tuesday night after the doctor appointment.
Love Matt & Jodie.
Sunday, May 23, 2004 9:17 PM CDT **UPDATE MONDAY 05/31/04 MEMORIAL DAY**
Jodie is doing so much better. She insisted on hosting a Memorial Day BBQ at our house today. So she has been working hard all weekend getting ready for it. Signs of old Jodie returning. Her throat is still a little tender but much improved. She still needs naps but does really good in between. She has really started to take control of all of the things she had to let go in her life for a while. On Saturday I went hunting for that elusive King Salmon on the Kasilof River with Charlie. We were skunked. That is why they call it FISHING instead of CATCHING right? While we were gone Jodie took the kids to the zoo, then the park and just had a marathon day. She really enjoyed it.
The weather has been spectacular the last few days but took a turn for the worse this morning putting our BBQ in jeapordy. We will still have a damp one I guess. Just good to be with friends!
Take care everyone, will do a mid week update to report on scans and line removal etc.
Matt & Jodie.
**UPDATE THURSDAY 05/27/04** Jodie has improved a little (although it will still take some time for her throat to heal and her energy to bounce back). The kids have school until June 3, and then our summer officialy begins. Jodie has plans to have her line pulled during the middle of next week. Other than that is life as normal with lots of baseball mixed in!
Matt.
SUNDAY 05/23/04 (JODIE)This coming week is a pretty significant week for me. My last day of radiation is Monday. Wednesday marks a year since the start of all my treatments--the start being my surgery to remove my initial tumor, and Friday is the one year anniversary of my diagnosis. I hope to be able to get my central line out this week too, and Wednesday marks three months since my BMT, which means I can start eating normal again (ie. salads, salads, salads!!!) Now my throat is so sore, I will probably have to wait a little longer, but still it is an exciting day!!
It is really amazing to me as I look back over the last year and remember the fear that I had about my surgery and then about my treatments. I remember sitting in Dr. Matthay's office at UCSF in August and hearing her tell us what we would have to endure just to hope to live a few more years. As she talked about the chemo, bone marrow transplant, and radiation, I couldn't hold back the tears. I was so scared and so unsure of what this would mean in my life. How would I survive the treatment, let alone the disease. But now to look back on this year, I can only see the immense amount of blessings that our family has received and how much we have grown. I think of all the wonderful, inspiring people I have met that I would have never had a chance to know in any other situation. I think of the knowledge that I have received about the love of a caring Heavenly Father and his desire that we, each of us, is filled with peace and happiness, in times of distress as well as in times of prosperity. I think about the opportunity that my children have had to live with Grandma and Grandpa Charlie and what great memories they will have from that experience. I think of COUNTLESS acts of service and prayers from people we know; people we don't know; and people we have come to call friends. I will be forever grateful for these and many, many other blessings our family has received over the last year. I know that I am not done with this trial yet, and might not ever be, but I know that my greatest blessing in this life is my wonderful husband and with him I will be able to accomplish whatever comes my way!
Hopefully, we will have a PET scan and an MRI scan in the next week and will be sure to post the results. I should also be starting the retinoic acid soon.
We will update again in a few days!
Jodie:)
Thursday, May 20, 2004 6:20 PM CDT You would not believe what an amazing day it is in Alaska. Sunny, 65, and the most amazing blue sky with the sno capped mountains in the background.
Jodie is still struggling with the pain in her throat. She had a hard time sleeping last night due to the pain. The doctor told her that after her last treatment on Monday, she will begin to improve within about 2 weeks. There are other milestones! She gets to have her central line taken out which has been with her since last August. (The tube that goes into her aorta that delivers blood and chemo etc). She is looking forward to that.
She is also begining to grow hair (peach fuzz). She stares in the mirror every night when she brushes her teeth looking from side to side to check the progress. She will tell you that she is not pleased with a few bald spots that remain, but I think it is doing great!
Other than that, all is well. Will add more later! Maybe even a picture of the fuzz if she will let me!
Monday, May 17, 2004 11:18 AM CDT Happy Monday to everyone! (Ya right) I am sure now that spring is here people are enjoying their weekends as much as we are. Last week we had a baseball practice every night from Monday-Saturday. But they are having fun and we can endure until July 7th (end of the season).
Anyway, Jodie is doing about the same. I see her grimace (sp) with almost every bite she swallows because her throat is sore but she is still eating! Her energy level is about the same and she is still able to function quite well. She has lots of aches and pains and I sometimes just wish....well you know.
She has about a week and a half of radiation left (she is glad that is coming to an end soon, mostly because it is a Monday-Friday thing at 9:00AM. I think she would like to have her days back.
Well, that is all for now. I will try and update on Wednesday or Thursday.
Matt & Jodie.
Thursday, May 13, 2004 1:05 AM CDT Hi Everyone. Just a quick update. It is 10:00 pm and the sun is still up and will stay that way until about 11:00PM. It is really beautiful here, things are starting to green up and trees blooming with leaves etc. We have had some great weather and fishing season is almost here! I have been working on getting our work boat and our boat at home ready for the season.
Jodie continues to stay about the same. Still a little tired and having problems with her throat but I think it has stayed about the same. She has about 2 weeks to go. Hopefully she will not get any worse. She has been able to manage pretty good though. She has lots of people to help her take care of Katie while she goes to radiation and we are so glad for that.
Charlie and Jean are still doing well in their new place. Jean is enjoying her job and Charlie is looking forward to having some time off to fish this summer. He told me only three more weeks!
Take care everyone, will do another update this weekend.
Matt & Jodie
Monday, May 10, 2004 0:13 AM CDT Happy Mother’s Day!
We had another great weekend that included some baseball practices and spring carnivals. Emmy had her first T-Ball practice. I think she will do well and seems to enjoy it.
We took Jodie out for breakfast on Saturday night because Jodie enjoys that. Sunday mornings are very busy for us. Jodie got a gift certificate for a mother’s ring that she has always wanted. The kids made her some beautiful cards and paintings. One of the sweetest things is that cousin Alek knitted her a stocking cap that really moved Jodie. It took him two weeks to make.
Jodie is beginning to slide a little bit. Her throat is really starting to bother her and is affecting her eating. She has not been able to swallow much normal food. She is supposed to avoid spicy foods, rough in texture, etc. She is also is starting to get more tired. I have a feeling things are about to start getting tough again. She wants me to point out that the pain is only a 4 on a scale 1-10. Even though she has gone through worse, I am still worried about her.
Hope you all had a fantastic mother’s day.
Matt and Jodie!
Thursday, May 6, 2004 10:53 AM CDT I will try and do updates at least twice a week now. Jodie is still hanging in there, and doing quite well I might add. She is starting to get some fatigue and a sore throat but she thinks she might have a cold so we are not sure if it is the radiation or the cold that is causing this. At any rate she gets up at 7:30, gets the boys off to school, gets Emmy and Katie ready for the day, drops of Emmy at school, and takes Katie to play at someone's house. Then she drives herself to her radiation, drives home, takes a short nap, then picks up Katie and is supposed to rest after that but she does all kinds of stuff she is not supposed to. So you can see she is doing well.
She insists on making dinner and doing chores too! I think she is really feeling some of her independence and that makes her feel good. I have been back to work for almost a month full time now. That has been nice. Emmy and Hayden are starting baseball as the weather has been great (60-70's). We love a warm day in Alaska!
It is starting to sound like a trite phrase when we say "We thank you for your thoughts and prayers" but both Jodie and I still mean that as much as we did when all of this first started (almost a year ago). Thank you!
Matt & Jodie.
Sunday, May 2, 2004 5:17 PM CDT Hi Everyone,
Things have been going pretty good. Jodie continues radiation once a day each day except weekends. She is doing really well so far. No significant side effects. She is doing about the same as before the radiation. Periods of energy followed by exhaustion (pretty normal for a mother right?)
Jean and Charlie moved to their duplex this weekend. I know they were excited to have their own space but we will miss them. They did so much to get us througth this that we will be eternally greatful to them for that. I think she starts a new job Monday. I know she is worried about that and will miss her friends at her Hill AFB.
We have a pretty normal week planned, nothing to exciting. We will update if we have more.
Thanks to all!
Matt & Jodie
Wednesday, April 28, 2004 11:27 AM CDT Jodie came home last light glowing, not from her happy disposition, but from a quick shot of plutonium or whatever they use for radiation. She said it only took about 30 seconds to administer the dose, but over an hour and a half long process by the time she leaves the house and gets out of the waiting room on to the table.
One side effect she has already noticed is some of the same burning pain at the site of the old tumor they removed. They are shooting radiation at that area so I guess that is probably affecting some of those same nerves. Jodie also had to get a red blood cell transfusion yesterday so she had a long day! Other than that she feels pretty good and has a schedule of radiation planned for each day at 9:15.
On Monday night our family picked up some trash along the roadside where we live. We had several bags and a large cardboard box filed with garbage pilled up along the roadside. Well, it has been very windy yesterday and today. Last night I was bringing the boys back from scouts and we noticed several of our bags have blown back into the field and the box and all of it's contents are now distributed where they started. I told the boys that we will have to go back and pull them to the road and pick up the stuff from the box. The boys moaned and groaned. I said, "Boys I wanted you to learn about taking pride in our community and that we shouldn't expect everyone else to pick up trash etc. etc. etc." Hayden responded "Dad, we learned that on Monday night, we don't need to learn it again!" Ah, the joys of fatherhood!
Matt.
Saturday, April 24, 2004 12:37 AM CDT Happy Saturday to you all! Not much medical news to report but we just wanted everyone to know that we are still here and having fun being together as a family. Jodie and I went out to diner to LA MEX last night (we finally were able to use the gift certificate from SBS THANKS!) and just had a nice date. Jodie's Mexican options are still a bit limited by no fresh veges so she could not enjoy the fresh salsa with me but we enjoyed getting out.
Jodie is still doing well, working hard around the house and getting ready for radiation. Now they say it will be Tuesday (the computer is getting routine maintence on Monday). I keep teasing Jodie that somehow she has been able to delay this!
Anyway, the kids have a series of birthday parties they are excited to go to today. Other than that, should be a normal weekend.
Love you all!
Matt.
Sunday, April 18, 2004 3:37 PM CDT UPDATE THURSDAY:
Jodie pulled a fast one on us. She said she will not be having radiation at all. Too much trouble and she doesn't like the pen marks they put on her, doesn't go with her outfit. She actually will start on Monday. They did not have any openings today or tomorrow. Her simulation went well yesterday. So put those prayers on hold till monday.
UPDATE: WEDNESDAY
Jodie has her final simulation today and is expected to start radiation on Thursday the 22nd. Please pray that she will tolerate it well and that it will be effective. Thanks!
Matt.
SUNDAY:
There has not been much new to report. I guess that is why we have not been doing daily updates. I noticed our readership is slowing a bit because you are probably disappointed not to find new information right? Sorry. Jodie still has not started the actual radiation. It takes longer than we thought to get down to the nitty gritty. She did have the simulation and x-rays. She has another simulation this week and then the next day she starts. I guess it takes a while to program everything into the computer.
Jodie and I did change Oncologists finally. We found someone that people in Seattle had recommended. We met with her this week and really liked her.
Jodie’s health and energy is at about the same level it has been for a while now. She still has times where she seems normal and then pays for it a few hours later. It seems that she wants more than anything to be able to do all the things she has planned in a day but just runs out of gas. Updating the website is one of those things she wants to do. We went out to dinner with Obe and Kim, and then to a church meeting. She was thrilled to see so many of her friends and learned they were going out to Applebees for desert. She wanted to go but on the drive there she said she just needed to get some rest so we stood them up! (Sorry!)
I went on my first out of town work trip for 3 days to Cordova, AK (a small but beautiful fishing port). It has been almost a year since I have traveled for work. I feel so lucky I found this job. I have been to some spectacular places. It would be neat to live in a place like that for a while but… I guess small towns have their disadvantages too. You can go to their webcam and see what it is like there at http://skihillcam.ctcak.net/
The kids are doing well, Charlie and Jean have been busy also. The snow is finally melting much to the delight of our community. We have made it through another winter. However, I took the studded tires off of the van last week and planned to take them off the Suburban on Saturday. Sure enough, it snowed on Friday night! (I took them off anyway as I sign of protest!).
Thanks again to all who do so much to help us.
Sunday, April 11, 2004 5:02 PM CDT Happy Easter! Jodie keeps telling me that my updates are not entirely accurate and that she is going to do one herself but....she never has the extra time to sit down and do it. When she feels good she is up cleaning or playing with the family and then she gets tired and has to rest. So, last time we left things she was getting ready for the radiation. On Friday she got little tattoo dots on her neck & spine and chest. Those are the reference points to aim the radiation on. Early this week she goes in for a "final rehearsal" where she lays down on the table and they make sure they are happy with the way everything lines up. Then the next time it is the real thing. We expect that sometime during the middle of the week.
We had a great weekend and enjoyed Easter with the kids. Emmy had a flu bug that Katie had last week so Jodie was not able to go to church. Easter means something special to us because it reminds us that there is a purpose to life beyond working and getting "stuff", and that because of what Christ did for us we may all live again. That helps us face a life threatening illness.
We love you all and wish you all a happy Easter. There have been so many who have helped and prayed for us this year. A special thank you to Jodie’s Aunt Shirleen for making a quilt and Rochelle for getting it raffled at Credit Union One. The money raised is almost the exact amount we owe Jodie's Oncologist. Thank you so much to those who participated in the raffle. You and so many others have made a huge difference in our life.
Matt
Sunday, April 4, 2004 8:08 PM CDT UPDATE: WEDNESDAY
Jodie and I met with Dr. Chung, the Radiation Oncologist here in Anchorage. He had been in consult with Dr. Douglas in Seattle and they both determined that Jodie needs radiation on the c-6, t4-t-10 vertebra which is basically from the collar bone down to her mid spine to get rid of small "small malignant lesions" on her spinal column and the site of the previous tumor that started this whole thing. We determined that conventional radiation (one focused beam) is probably the way to go. They are concerned about doing damage to the heart if they use IMRT (the 360 degree radiation). They said that she will probably have damage to her left lung but the rest of the lung will pick up the slack. She starts today with more scans and prep work including the tattoo dots on her back to line up the machine each time. She will go in M-F for a 10 minute dose for 4-5 weeks. She was told to expect some irritation to her esophagus and some fatigue for a few months afterward. The goal of all of this is to kill the remaining lesions. Jodie is a little worried about the side effects but is being strong as always. We love you all! More info later.
Matt.
SUNDAY:
Jodie keeps saying she wants to do an update but she hasn't had time. She has been doing quite well and has been working in spurts and then resting. She gets up and runs around the house like she is fine, then the next thing you see is her sleeping on the couch. I keep telling her to slow down but she doesn't listen very well. She just gets it in her head and then... you know! It is so great to see her doing things she used to. She made us pankcakes and eggs for breakfast today which was a treat.
We still are not sure what the exact plan is for the radiation but we meet with the DR on Tuesday. We will update more then.
Matt.
Saturday, March 27, 2004 12:36 AM CST UPDATE: TUESDAY
Jodie continues to do well and when she feels good, she feels really good. When she crashes, she crashes hard. She will be running around acting normal, and then all of the sudden she just needs to sit down because she has had enough. All of us at home are glad to see her doing so well but wish she would pace herself a little more. We are begining to set up things for her radiation next week and will give more info on that as we learn more. I have been back to work this week which has been nice.
For the record, anyone who reads the guestbook and reads about me falling in the Kent's pool.....I WAS PUSHED and IT DID IMPRESS THE GIRLS!
Matt.
SATURDAY:
We have been welcomed home to Alaska by two days of snowfall. Believe it or not I am really enjoying it! I know everyone else is probably sick of the snow and ready for spring, but I feel like it is my welcome back home to Alaska!
It was so great to see the kids when we arrived home Thursday night. Tanner, Hayden, and Katie came with Grandpa to pick us up at the airport, and when Katie saw us, she couldn't hardly stay in her car seat. She just kept laughing and talking and jumping around. It was so cute. When we got home Emmy was already sleeping in her bed, but I couldn't wait to see her, so I went in and woke her up. All the kids were so excited to have us home, and I couldn't stop touching them and kissing them.
Friday morning was so fun to wake up in Alaska! Matt and I had really missed our bed, and we had a great night's sleep and woke up to the sounds of family. I was quickly pulled into playing "Honey" and have had Katie as a constant companion since. She had a hard time giving me up to go to bed.
The last few months I was home, I had the constant nag at the back of my brain that I was going to have to undergo a bone marrow transplant. It was scary and I didn't realize how much it effected my life until now that I am home again and I am free of that fear. What a wait off my shoulders! It is behind me now and I am excited to get back to as normal a life as possible right now.
I still have to be extremely careful for the next three months about germs and sickness. My immune system is still not all the way back to normal. I can go to church but need to be very careful about staying away from anyone who is or has been sick. We appreciate everyone's support and help with this.
Thanks again to everyone for their love and support through this most difficult tiime in our lives. We couldn't have done it without you!
Thursday, March 25, 2004 10:11 AM CST Well today is the day we have been waiting for. Jodie can hardly believe it. To celebrate I am going to climb the rock pinacle at the flagship REI store. (I bought a little pocket knife and they gave me a free rock climb!) We had a few appointments yesterday to wrap things up and have one more final one with the doctor today to go over her future schedule for follow up appointments then we are off to Alaska. We enjoyed visiting with some old friends for Marysville last night and have once agian realized how much of a difference friends can make in your life. I have said many times how greatful we are for what each of you mean to us. We are thankful for what each one of you have done for us!
Well, Jodie says I have to get cleaning this apartment so I will sign off for now. Next time it will be from Alaska!
Matt & Jodie!
Friday, March 19, 2004 3:56 PM CST UPDATE: TUESDAY
Today we had an appointment with the Radiation Oncologist to plan Jodie's radiation in Anchorage. We also had her last clinic appointment today! They took her off all IV fluid today which was our last hurddle. We have a few loose ends tomorrow and Thursday before we can leave. Tonight we are having dinner with old friends from AT&T where I used to work from 95-97.
UPDATE: MONDAY
We have another light day of appointments (just a blood draw) so I am going to take Jodie to visit a friend and take her shopping for the kids (I get to drive and carry the bags). Jodie's energy level continues to improve a little each day although she feels like she can do X, and runs out of gas half way into it and realize she can only do Y. (Is that Algebra?). Looking forward to each day closer to going home. Matt.
FRIDAY:
We had another appointment today. Everyone keeps telling me I am doing really good, but I keep telling them I don't feel so good. I know I should not be complaining, but I am tired and achy all over most of the time, and I keep waiting to wake up one morning and feel better. The doctor says it will come back slowly over the next few months, but you all know I don't do many things slowly and it is very frustrating to me.
Okay! Enough complaining. The good news...no, the GREAT news, is that we are set to come home next Thursday!!!! That is less than a week away. We have quite a few doctors appointments between now and then to keep us busy, and of course I have to find some time to get to Mervyns for the kids spring clothes before we leave, so next Thursday should come pretty quickly. What a blessing!! Next Thursday is Day 28 for me and I was not supposed to go home until at least Day 30. Now that I have complained to all of you, let me count my blessings! All of you are, of course, my number one blessing. All of your prayers have gotten me through this extreme trial and to where I am now and I could never express to you my gratitude for your faith, love, and concern. Some other amazing blessings--food has been tasting good for the passed week (most people take much longer); I have not had one complication; the doctor says I am in the top 5
Tuesday, March 16, 2004 3:40 PM CST UPDATE THURSDAY: Jodie did not have any appoinments yesterday or today so she just got plenty of rest. She said she is getting very tired of TV. I can't blame her for that. Jodie and I saved up all of her energy because she wanted to go to Red Lobster (she had a craving for crab). So we celebrated St. Patricks Day at Red Lobster. Her taste of food is improving, her nausea is almost gone. She has been doing really well at eating and drinking. The plan is for her to be off IV fluid at home by Friday. If she can do that she will be well on her way of going home back to Anchorage! More later....
TUESDAY: We had a nice day of appointments today. They told Jodie she is doing well on her eating and drinking. She has to start eating more meat to up her protien though! I am going to put her on the Atkins diet with me. I have lost over 15 pounds and 4" around the middle and I get to eat all the meat I want. Still having trouble with cravings for Kit Kat bars, cookies, and other chocolate delights though.
Jodie continues to do better, she is tired in the morning, ok around lunch time, but then gets tired in the afternoon and evening. She sleeps about 14 hours a day which helps her.
We miss the kids and look forward to each day that brings us closer to being back with them. There have been so many little miracles along the way. People that donated time (leave) and money for us to be here. People that have watched our kids, the cards, emails, notes, care packages, gifts of love, and prayers. We see each one of them as a rung on a verylong ladder that has helped us climb out of a deep, dark, scarry pit we found ourselves in over a year ago.
We are about half way out, and can see the sunshine. When Jodie gets home she will still have the month of radiation and 6 months of Rhetinoic Acid (Acutane pills) to go. (They say even without these things it would take her 6 months to a year to feel normal after the transplant. Add all of these other treatments that still lie ahead and you can see why I say half way out!) We love you all!
Matt & Jodie.
Thursday, March 11, 2004 6:37 PM CST UPDATE MONDAY: Jodie continues to improve a little more each day. I would estimate that she is probably at about 50 percent of normal right now which is really good. She can eat some, drink some, and has enough energy to walk home from the clinic today. She did have to have a Nupagen shot to elevate her blood counts because they were starting to fall some. They say not to worry. Jodie has gotten some cards, emails and a few care packages from people that have really made her smile. We are so greatfull for all of you. Thanks for thinking of her! Matt.
UPDATE SUNDAY: Jodie has just been taking it easy and resting in the apartment. We did go outside and sit on the porch with a family that is going through a similar treatment. It was another nice day yesterday. Jodie is still doing about the same (pretty good). She has to carry a back pack with an IV fluid pump that keeps her hydrated. More than anything she just misses the kids. We love you all.
Matt & Jodie.
UPDATE FRIDAY 6:00PM
Jodie is doing so much better it has amazed even her doctor. He told her today that in terms of patients he sees at this stage of treatment (16 days after transplant) she is in the top 10 percent of the class. She is still very weak, and still is has nausea problems. Overall though she is doing really good. She is starting to eat small amounts, and is keeping it down. Thanks for all your hopes, thoughts, prayers that helped get her there!
Matt.
THURSDAY: Here I am sitting at an actual table with a real chair. I can't believe that I actually made it back to the apartment today!!!! I am so excited!!!
I am so grateful for every prayer and thought that have been said for me over the last three weeks. There were some definite days that I was not sure how I would get through, and now to look back, I don't think there was ever a day that I wasn't laughing a little; I surely felt the influences of heaven each day that carried me through and continues to bless me.
My nausea is really unrelenting. It has toned itself down a little, but it always seems to be nagging at me. I have been able to eat the last two day--hence the reason I am in the apartment (with FRESH Air) instead of still in the hospital room. The other side effect of the chemo that I had not been planning on is the way that my mouth feels. It is hard to describe, dull taste buds and "soft feeling" on my tongue. So when I put something in my mouth just the yucky feeling and bad taste make me gag. All the nurses kept saying that you just have to eat to live not because it tastes good. Easy for them to say!! I guess this could last another 10 days or two weeks. YUCK!
All other aspects of my transplant have gone off beautifully and without a hitch. I know that is from all of your prayers.
Thank you for your messages. I looked so forward to Matt bringing them every day. They are a lifeline to me and sometimes gave me the much needed boost to carry on. I love you all and am grateful for each of you as I read your messages. Please don't ever think that your messages are overlooked because the are not.
Jeremy left today.:( I had so much fun with him while he was here. He took care of me like no other. I will forever be grateful for this time that we had together.
Here's hoping I can make it through dinner tonight!!
Jodie
Thursday, March 11, 2004 0:19 AM CST Jodie is doing better and has improved about 10 percent in the last two days. Her nausea is much better (still there, but much better). She thinks it is caused by a piece of skin in her throat that makes her gag. Sorry for the visual! Anyway, she was able to eat a half of a baked potato (I feel like Dan Quale, did I spell potatoe right?) She also ate some pudding and some soda crackers. She asked her doctor if she could come home tomorrow and he said maybe. We will see how she does tonight. Jeremy is going home tomorrow and he has been such a great help to Jodie and I. I think he really enjoyed the time with Jodie. I know she enjoyed having him take care of her.
Today I took him on a short (5 mile) canoe ride and we paddled up to Bill Gates' house. His security thought we got a little too close. (It was a beautiful day today).
Thanks for all of those extra prayers. I know they are helping.
Matt.
Thursday, March 4, 2004 4:53 PM CST UPDATE: Monday 10:00PM. I arrived back in Seattle today at about 5:00pm and went and visited Jodie. She said her mouth and throat pain is almost gone but she had several episodes of vomiting while Jeremy and I were there. She was overwhelmed with emotions (happiness that I am back, helplessness and discouragement because she feels like she can't do this anymore. Who could blame her?). But she knows that she is getting closer to getting better each day. I have been overwhelmed with your response of love and prayer on our behalf. I will print each of them out and take them to her! Thank you! Matt.
**sunday 5:00pm,JODIE JUST CALLED ME AND ASKED ME TO PUT THIS ON THE WEBSITE. SHE IS HAVING A REALLY HARD TIME EMOTIONALLY. SHE WANTS TO GET OUT OF THE HOSPITAL AND THEY WILL NOT LET HER GO HOME UNTIL SHE CAN EAT. SHE ASKED IF YOU WOULD ALL PRAY THAT SHE CAN EAT AND BE COMFORTED EMOTIONALLY AT THIS DIFFICULT TIME. SHE HAS ENOUGH FAITH TO ASK BECAUSE SHE FEELS/KNOWS THAT YOUR PRAYERS MAKE A DIFFERENCE.**
UPDATE SUNDAY: I spoke with Jodie by phone today and she said she continues to struggle with nausea and vomiting. She is trying her best to stay up beat and just wants out of the hospital. She said her blood counts are improving meaning the stem cells are doing their job by rebuilding her bone marrow and immune system. She will probably be in the hospital until Weds. Jeremy is doing a great job keeping her company. We saw the Iditerod race yesterday for the first time since we have lived here. One of the mushers gave Hayden a high five as he and his 16 dogs came down the course! Grandpa Charlie got a souvenier bootie from one of the dogs!
Matt.
UPDATE FRIDAY/SATURDAY: I am back in Sunny Alaska, new blanket of snow, sunshine, it is great. I have enjoyed seeing the kids. Katie was especially glad to see me. Last I heard from Jeremy, Jodie is doing about the same. Still having some trouble with nausea for some reason. I think it is because they are trying to get her back on food and drink again. I will add more later if there is anything. The kids and I hope to head down to the start of the Iditarod Race tomorrow.
Matt.
Jeremy is here (Jodie's brother) to take my place for a week so I can go home and see the kids. He and I just got back from visiting Jodie and we were both suprised to see her doing better than last night. She was able to talk..in fact, she wouldn't shut up! (More like normal right!) Anyway, last night she couldn't even say two sentences without having to stop because of the pain. Today she was happy and just talking away. They gave her some extra pain medicine last night and today and I think that has helped alot. Both Jeremy and I noticed she was pretty loopy but whatever they need to get her through we are all for it. She has said and done some funny things while under the influence! They tried to get her to drink some water and that caused some nausea and vomiting so she will continue to be fed by IV until her throat heals.
That is all for now. Thanks for checking in! Jodie and I really appreciate it!
Saturday, February 28, 2004 2:22 PM CST UPDATE: WEDNESDAY 4:00PM, Give Jodie another 5 percent. She is doing a little better each day now. We may be a day or two ahead of what they told us to expect! Yea! Those notes of encouragement and prayers have helped! Thanks everybody. Headed to a friends for dinner tonight. C-ya.
Matt.
UPDATE: TUESDAY:6:30 PM, Jodie and I have decided never to watch another stupid "BOY MEETS GIRL AVERAGE JOE BACHELOR/ETTE SHOW AGAIN! The right person never wins! A slight improvement today over yesterday, I snuck her out to get a breath of fresh air on the way to get a chest x-ray (she still has a slight fever). She enjoyed it. I bought her a card and she insisted that I put the words on the website. The card says "Don't think of it as being stuck in the hospital, (next page) Think of it as staying at a hotel that smells like disinfectant, doesm't have a pool, and has terrible continental breakfast! Get well soon!" I would have changed the ending to "terrible room service!!" I guess it echoed how she feels. More tomorrow.
UPDATE: MONDAY 3:00 PM, Things are about the same, fever finally went away! Her mouth and tounge are still very sore, and her counts continue to fall lower and lower. Today is called Day 5, (since her transplant) and he told us to just hang in there until after Day7- 9, that is when things should start to turn around. Everyone please pray it is Day 7! Thank you for all of the notes and visits to both Jodie and myself. We feel your prayers!
Matt.
UPADATE: SUNDAY 4:00PM, I have some good news finally. I was pretty worried because Jodie's fever had spiked to 102.2 and had remained there for about 24 hours. It finally came back down to 99.4 where it has remained constant all day. The nausea is under control, and she was able to walk around the hall with me today. Her mouth & throat are still getting worse. She talks kinda funny with a swollen tounge! We are expecting that to improve sometime in the middle to late part of this week. I made a 5 mile trip in a row boat yesterday to get away from it all. It was a sunny day, it was good therapy for me. Hope all is well with each of you.
Saturday: Here is another update. Greetings from Seattle. First I want to say thank you to all of those who have sent little notes on the guestbook or email. They have really helped Jodie's moral. I have been worried about her. She is on her 10th day in the Hospital now and has many more to go. She sleeps almost 18 hours a day and is only awake for an hour at a time before she falls asleep. She will be talking to me and will fall asleep in the middle of a sentence. I saw her this morning and she said that her nausea is still there, but more under control than yesterday.
However, there are some new challenges. She has developed a slight fever as her counts have fallen to record lows (all part of the plan) and has severe pain in her mouth and throat now. They have put her on a morphine PCA pump so she can push that button when she needs some relief. As I said yesterday she will be fed by IV for the next week to 10 days.
I am sure this will be a difficult week ahead for her but I remind everyone that this is all what the doctors told us to expect. This is why bone marrow transplants are so difficult. Not because of the transplant itself, but because of what we went through in October collecting the cells (Jodie was getting 10-12 injections a day of a drug that hurt her bones causing them to release stem cells) and chemo/recovery she is going through now. Just think though, all of those cancer cells are feeling the squeeze!
I also wanted to say thank you to those who have taken our kids on Friday nights. They look forward to them all week and I am glad they can go somewhere fun. It makes Jodie and I so glad to know they are having fun. We miss them terribly.
We love you all!
Matt.
Tuesday, February 24, 2004 2:21 PM CST JPDATE: Friday 4:00 PM.
Jodie is doing a little better today (about 5percent). She has the same issues, but is starting to develop the mouth sores (for real this time). They have also put her on IV feeding. She can no longer swallow in addition to the nausea so they said she will not be able to eat for at least a week. She is feeling up beat, and we even visited another patient that she met. A nice lady with two daughters. She sends you all a smile!
UPDATE: THURSDAY 11:00AM
Jodie is doing about the same. A little more alert last night but the nausea about the same. I called to talk to her at 10:00AM this morning and she said she wanted to sleep. I am going over after lunch for a few hours. We were both furious about that dumb bachelorette show. (She should have picked Matt).
UPDATE: WEDNESDAY 4:00PM.
HAPPY BIRTHDAY JODIE! At least that is what the doctors and nurses call it. Today they transplanted Jodie's stem cells back in to her to grow her a new bone marrow and immune system. The process looked simple enough. They brought in 6 bags of frozen blood looking subtance, thawed it out in hot water, and infused back into her body one unit at a time. Unfortunetly it made her already difficult nausea and vomiting much worse (predicted side effect). She was violently ill for about an hour. I was so proud of her. She has repeatedly accepted walking into a buzz saw of pain and suffering to fight cancer. She did it again today. THIS IS WHAT WE CAME HERE FOR! We knew it would be difficult, but we knew it had to be done. I left her so she could sleep for http://www.caringbridge.org/index.htm
about CaringBridgea few hours. Now the recovery process begins!
TUESDAY 12:00 NOON.
It’s official! Jodie is not coming home from the hospital to the apartment for probably at least 2 weeks. I guess I scrubbed and scoured the apartment for no reason. I was so proud of myself.
Jodie continues to have problems with nausea, they have not been able to get her off of the Ativan, Compazine and Kytril and other anti-nausea medicines. She is not eating well at all. I did pick her up an Arby’s Beef & Cheddar sandwich (might make some of you nauseous I know) and she did well with that. But no hospital food has been consumed for a while.
She has also had a problem with very low blood pressure (80/60) and high pulse 120-160. That has gotten a little better but still not where they want it. She has always had low blood pressure but not that low. They say it is a side effect of the ultra strong chemo and not to be overly concerned about it as they expect it will improve soon. They also are expecting “severe mouth and throat sores” with mucositus from the Melphelan to start within a few days. Her blood counts are also falling as predicted from the chemo.
Because of all of these issues, and the fact her transplant occurs tomorrow (just like getting 6 units of blood only they are stem cells instead) they felt it would be best if she stayed in the hospital until her blood cell counts start rising and her mouth sores are over. This should be in 2-3 weeks. This is something Jodie and I were prepared for. We were just hoping she might get to come back to the apartment for a few days between the chemo and the stem cell transplant.
As you might guess, Jodie is a little upset and depressed right now. The thought of spending that much time in the hospital does not sit well with her lifestyle. She has learned (like most patients) to hate the food, tired of the view, tired of being woken up 5 times a night by nurses checking vital signs etc. Wishing she had more energy, wishing she had a normal life etc.
As I have said many times before, we appreciate your support. Each day I print out notes and emails you send and she reads them or I read them to her. She is not up to visits or phone calls right now. But the notes always make her smile. These next the few weeks in the journey will probably be the hardest. She knows she will make it through. The time will pass. We so appreciate all of your love and prayers.
Friday, February 20, 2004 1:47 AM CST UPDATE: MONDAY 10:00 AM. The doctor wants to keep Jodie in for another day or two. They want her to be able to get over the nausea so she can eat/drink at home. But she did finish the CHEMO last night! More later...
UPDATE: SUNDAY 6:00 PM.
Jodie is doing about the same. Not much better, nut any worse. Still dealing with a lot of nausea and is sleeping most of the time. Her last CHEMO should finish tonight by 10:00PM! YEA! Long road ahead but she amazed me. She has gone through so much, and any of us would cringe at the sight of what this "Treatment" does to an otherwise healthy person. I have so much admiration for her and others that face this fight head on!
UPDATE: Saturday 11:00PM
Jodie is sleeping most of the time but is holding her own. She only had episode of vomiting today, the rest of the time they kept her knocked out. **I was wrong about the mouth sores** I thought she had complained about that but I guess it was something else. So that is good news. (It will probably come later next week). I have continued to print out notes to take to her. Thanks to all that have done this for her. She enjoys them. ONLY ONE MORE DAY OF CHEMO to end six months of CHEMO. After that she gets her stem cells back on Wednesday and then the recovery begins.
UPDATE: SATURDAY 12:00noon.
I got back late Friday night and am headed up to see her soon. The poison is starting to catch up to her. She slept almost the whole time I was there last night and she is really starting to be effected by the nausea and her throat is begining to develop mucositous (bad sores in her mouth and throat) which is a side effect of the melphelan (a new chemo drug she has never had before). It is so hard to see her with 5 I.V. bags hanging but we are so glad these treatments are available. I am holding up ok, wishing Jodie and I were home in Anchorage with our kids headed to the Kenai for a little fishing trip (after a hearty meal at Wayne's Texas BBQ). Jodie will probably be in the hospital until at least Monday. They may let her come home to the apartment but side effects could send her back in...we will see.
UPDATE: FRIDAY 4:00 PM.
Jodie is doing really great. I am a little surprised that she has not gotten very sick. They said that it will probably hit her in a few days. I spent a few hours with her this afternoon and going back after dinner (we watch a little T.V. like Starting Over, Survivor etc.). She is still able to eat and laugh but says she feels tired a lot. (The nausea medicine makes her sleepy). Thats all for now....
Just got back from the hospital. Jodie is still doing pretty good. She did get a little nausea today but they were able to keep it under control. She was feeling a little sad and down today. I think it is because today is only day two of at least 40 days of being in and out of the hospital.
I have been printing out each of the messages (both email and guest book)that you are leaving and taking them for her to read. Each time she reads them it uplifts her spirits and makes her smile so keep them coming. It is the best therapy she can get right now. Jodie got to call the kids tonight and that helped.
I noticed that we have crossed the 10,000 mark with visits to this site. I must say that I never would have guessed we would have so many visits. Just a sign of how many people care about Jodie. You are all so kind. We feel your strength and prayers!
Monday, February 16, 2004 4:02 PM CST **UPDATE THURSDAY 9:00AM **
I called the hospital this morning and they told me Jodie is doing well. I left her about 11:30PM last night. She had just started her chemo at about 9:00PM. Her nurse said that she did not have any nausea and was able to get rest. I am headed back over at lunch today. Will add more later.
** UPDATE WEDNESDAY 3:00 PM**
Jodie started today, took her to her room at 8:00AM, waited until 1:00PM Before they got things rolling. They start by giving her 3 hours of hydration (saline) by i.v. and then will begin the 3 drugs (Etopiside, melphalan, and cysplatin) constant 24hrs for 3 days and then one day of just two of them. I came home for a little rest/food. Jodie is happy and as ready as she can be. Will update more later.
**UPDATE TUESDAY**
We just met with the doctor and he gave us the green light to start tomorrow. Jodie checks into the hospital tomorrow at 8:00AM and she will begin the strong chemo for 4 days, then three days of rest, then they will give her back the stem cells to help her recover from the chemo. Jodie is doing well and prepared to get started because she knows it gets her closer to the end. Love you all. Thanks for helping us be here.
Only two more days until we can get this party started! Its a rainy day in Seattle today, but it is supposed to get nicer each day this week. It would be nice to have sunshine as I start the chemo for this bone marrow transplant.
Matt went fishing today with Larry Keeney from Marysville. He was so excited to have an outing, especially a fishing outing. I had to remind him though that the fish in Washington aren't as big as the fish in Alaska. Then he reminded me that the lakes in Washington aren't frozen over like the lakes in Alaska! I'm staying home having a lazy day. Nothing much to do here. I'm hoping to catch up on some e-mails and stuff.
For those of you who want to know, our contact information is located below under "Hospital Info." We are in the same apartment as before.
Saturday, February 14, 2004 3:27 PM CST Well, I have cleaned the apartment, done the laundry, and done some computer stuff. Now what? I don't think I remember what I did before I had children. How boring life is without them.
Matt and I have tried to keep ourselves busy the last two days. Thursday, after much encouragement from Matt, we went out in a rowboat on Lake Union. We were only able to go for 1/2 an hour because the rental shop was closing, but what a great day to be out there. I am not a big fan of the water, but I felt real comfortable with a SA from the Natl Marine Fisheries (and a life jacket)! Really we had a wonderful time.
Yesterday, we threw caution to the wind and went to a matinee. We had our bottle of Purrell with us and washed our hands before, after, and during the movie. We also went to the Cheesecake Factory (for Valentine's Day, a day early) and we enjoyed a great meal and I had a slice of cheesecake. Matt is not a big fan of cheesecake, but he said the mashed potatoes I got with my meal were better than dessert. They were REALLY good, but better than cheesecake with fresh strawberries? No Way!
The next three days will be a lot of sitting around. Any ideas as to something to do during this time would be great! Ideas need to be germ free and inexpensive. It sounds a lot easier than it is.
We are shooting for Wednesday for the start of chemo. I had to do ONE MORE nasal wash and wait five days to make sure I don't have some sort of germ still. It is kind of frustrating to be sitting here for days, but I love the fact that the doctors are so thorough and cautious. I know that I am in the best place to have a BMT. So Wednesday will be fine. Tuesday we will have the final meeting with the doctor to review all the results of the exams and evaluations I have had over the last month.
We hope everyone has a wonderful Valentine's Day filled with all the love you all deserve.
Jodie
Thursday, February 12, 2004 11:56 AM CST Well it is beautiful sunny day in Seattle! Considering how few they get here in February it must be a good omen! No more ice skating for me (it is strange to see green grass in February)! I don’t think I ever told you all about my ice skating adventures. My mom gave me a Sports Authority gift certificate about a year and a half ago for my birthday. I could never decide what to use it on. My son Hayden had been begging me to take him skating so I thought maybe that would be a fun thing to try. It had been about 15 years since I had skated last, and I had certainly never owned my own pair of skates. Well I found a starter pair of hockey skates for just the exact the amount of the gift certificate.
The nice young (16 year old boy) salesmen told me these skates come with a “free sharpening.” He asked me if I wanted to do that today or another day. (Well I wanted to try them out and I figured they were brand new so I would save the sharpening for a few weeks or when I thought they were dull). I went to this local lake (Westchester Lagoon) because they have a 1/3 mile track that the city maintains. I started out a little rough but did not fall. After doing only one or two laps I thought I would throw up I was so tired. I also could never seem to get up any speed or feel in control. (Those of you who skate on a regular basis are probably laughing right now because you know where this is going).
All that day I just kept thinking, you know maybe I should have had those skates sharpened. So I asked a guy I work with who I know is a former hockey player if you need to have skates sharpened when you buy them new? He looked at me like I was stupid and said “Of course, why do you ask?” I told him the above story and he could hardly stop laughing. “Did it feel like you were skating up hill and like you had no control?” Apparently my salesmen failed me a little bit. Well, needless to say I got them sharpened and was able to take them out two more times before we came down here and I must say, it made all the difference in the world (great excercise too)! I guess we all learn something new from time to time.
Oh by the way, Jodie starts out with a few appointments this afternoon and we should know what the plan is by tonight. Our kids are doing fine, the goodbyes were not as painful for them or us this time. We gave Katie and Emmy this beautiful bear from SBS (we named it Seattle) for the kids to hug every time they miss mom! They were so happy to have it and it means a lot to them. Thanks again to SBS for being so thoughtful.
More info later when we have some…
Matt.
Friday, February 6, 2004 4:15 PM CST UPDATE TUESDAY 02/10/04. WE ARE GOING BACK TO SEATTLE TOMORROW AT 11:30. Jodie passed her nose test and they gave us the go ahead to go back down. So...we have a lot to do in one day. Those of you who had offered to take the kids we will be calling again but we are going to figure that out later.... Thanks.
UDATE: MONDAY 02/09/04. We had a fantastic weekend. The Anchorage LDS Temple was dedicated on Sunday and Jodie was able to attend! She looked funny with a giant bubble around her head so she would not get sick! (Just Kidding). We just made an exception for a special occasion. It was a fabulous experience for our family to attend. She has a test today that will determine if her cold is gone and if she can go back to Seattle. Cross you fingers!
We apologize to all our loyal friends for not writing much the last few days. Many of you have commented that you miss daily updates. Sorry! I keep waiting to post that we are heading back to Seattle to start the transplant but this cold has been stubborn. Jodie is almost over it but still has the occasional runny nose/ congestion and they told us not to even bother taking the test until she was symptom free. Maybe on Monday? She is doing really well and it has been almost 2 months since her last chemotherapy. She has lots of energy (despite the cold) and has shown that when she is finished with this that there is a light at the end of the tunnel.
I have been working all week this week, which has been nice. We have another 10” of new snow, on top of the old stuff things are still really deep. Jean is even getting used to driving in it. Today she was out driving around in 8” of fresh un-plowed snow like it was no big deal. I was proud of her for that.
All the kids are doing well. Hayden and I went out for a private dinner. We are trying to give each one a night out with dad every few months or so. Hayden and I enjoyed a pizza buffet and a little light conversation.
We appreciate all the love and support we continue to get. More and more people find out and the snowball of support gets bigger and bigger. We rely on you all more than you realize.
More info when we get some!
Love Matt.
Tuesday, February 3, 2004 11:25 AM CST It has been a few days since we have updated this. We were hoping to say that Jodie's cold is gone and she is heading back down. But.....she still has symptoms and so we are still waiting for them go away. From what we have seen with Charlie and Jean and others we know that have it seems to hang on for a long time. Charlie and Jean are starting feel better.
We had a nice family day on Sunday and had the Lowry's over for some fun food and football game with a really weird halftime show! I guess many of you probably had a similar experience! It was good to see how outraged everyone has been at the whole thing. I would be worried if everyone ignored it.
The kids are doing well, keeping busy and running laps around our living room. The words "SETTLE DOWN and KEEP YOUR HANDS TO YOURSELF" frequently are heard around our home. (Mixed in with crying and laughter).
Hope all is well in each of your families. We will keep you posted in a few days.
Love Matt.
Monday, January 26, 2004 11:04 PM CST UPDATE FRIDAY NIGHT: BRRRRRR! We have averaged -5 for a high and -15 at night. Jodie is doing really well (she still has a cold but it seems to be improving). She has to have a test on Tuesday that will determine when she can go back to Seattle. Charlie and Jean have the same thing only it seems to be much worse. We are hoping they improve soon!
UPDATE WEDNESDAY: I woke up this morning in Anchorage!!!! I think all of you must have prayed a little TOO HARD for me to be reunited with my children quickly!:) It is great to be here with the kids. I will not be able to do much running around because the clinic staff does not want me to get another sickness that would compromise my immune system again. So I have to lie low while I am here. That will be a nice excuse to spend A LOT of time with my kids. (Make sure to check back in three or four days to see if I still have the same positive attitude about all that time with four children!)
While I am home they will test me with a nasal wash test to see if the virus is gone and I will not be able to go back to Seattle until the test comes out negative. They said it could take up to three weeks. We are hoping it is not that long. They have told me when I head back down to Seattle that we will pick up the treatment right where we left off, so I will have only "lost" these weeks I have at home. I don't think I will consider them lost but gained!
Jodie :)
UPDATE: TUESDAY, I am afraid it gets a little worse. Jodie's cold is probably a virus and they told Jodie they will not let her start the chemo/transplant for at least two weeks. So they sent her home. She is flying in tonight so at least she gets to see the kids. We are very disapointed because we were so ready to start both logistically and emotionaly. Now we have to gear up again. They just do not want to expose other patients or herself because they have no immune system. More info later...
MONDAY: A few pieces of bad news: First, I got a cold yesterday and will not be able to start my chemo until at least Friday. Better safe than sorry they say. I know that there will be a blessing from this somewhere in the future. There is always a reason when these unexplainable things happen--a blessing in disguise kind of thing.
Second, we got the results of the PET Scan, and it did show some activity in the vertebrae area. That means that most likely there is still cancer there, but it is getting smaller. So the news was not as good as I had hoped on Friday. But I was thinking that if there is a place to still have the cancer that is a good one, because they are still going to radiate those areas. So between the bone marrow transplant and radiation, I know we can get this Cancer gone by summmer!!!!
Peggy and I had a nice weekend. We went shopping most of the day on Saturday. She was very patient while I looked for a pair of shoes that I never bought! We also saw "Big Fish" and went to dinner. We attended church on Sunday morning and kind of relaxed the rest of the day. Now, because my chemo has been delayed, we decided there wasn't much for her to do here and she should probably head home. I don't think she is to excited to get back to work and snow in Denver because we have had such a nice time together. But I am sure that she will be excited to be back with family and friends.
Matt and the kids are doing good. The kids were so excited to see Matt when he got home and he likewise. They "camped out" in the living room on Saturday night, and I will have to confess that I would have loved to have been there, but I enjoyed my soft bed that night.
Thank you for all your prayers and words of congratulations and encouragement on the website. I have really been enjoying them being so far away from my family and friends.
Thanks for all each of you do!
Jodie
Friday, January 23, 2004 8:57 PM CST What a day today has been! My first day in eight months that I have been able to feel "cancer-free!" What an awesome feeling to find out about the negative results on the bone marrow biopsy and bone scan, and the fact that the spots on my vertebrae are shrinking! (In October they told us that the spots on my vertebrae showed no sign of cancer and would disappear over the next year) We haven't gotten the results of the PET scan yet, but since that was negative in October I am hopeful that it will once again show that there are no active cancer cells in my body! Wooo Whoooo!!!!
I have also been thinking that Tuesday is the day of the start of my next (and LAST!!!) chemo treatment. I guess I'd rather be thinking about the cancer-free thing I got goin' on. I keep thinking of all the things I want to eat before Tuesday. Doesn't that just show how sick I really am?!:) The last few days I have enjoyed a chopped salad from Cucina Cucina and a super burrito from Taco Del Mar, always devouring them as though they were my last meal--oh, and don't think it isn't showing on the scale. People at the clinic have told me that a bone marrow transplant isn't a weight loss program; do you think I should take offense to that?
Matt left today to be with the kids for a week and his mom, Peggy is staying with me. How grateful I am for loving family members and great friends and even many unknown people who have blessed our lives through these past months. That is one of the many blessings (Yes, I said many) of cancer--being able to feel and experience the love that other's have for you. What an awesome blessing!
Oh thats right I was talking about Matt leaving. I really miss him already--we had a great time in Seattle the past week and I am anxious to have him back but so glad that he can spend some time with the kids. I was talking to him tonight and heard the kid chaos in the background, and Oh, how I was wishing to be a part of that chaos. Everyone enjoy their family chaos double for me tonight!!
I had a pulmonary function test today. I am happy to report that my lungs are functioning at an average capacity. I have an oral exam on Monday so I am studying hard this weekend. Just kidding, that is how they refer to a dental visit. I think for some people a dental visit might be worse than a bone marrow biopsy and so they changed the name to a more amiable sounding name.
Everyone enjoy your weekend!
Jodie
Wednesday, January 21, 2004 5:53 PM CST UPDATE: THURSDAY NIGHT! WE HAVE SOME GOOD NEWS! We got some results of some tests back. We learned that the results of the bone marrow biopsy did not show any cancer cells. The last two times we had that test it was positive for cancer cells. The MRI also showed that the spots on the spine were smaller since the test done in October. We are awaiting the results of the PET scan done today. That scan will show spots that glow hot with active cancer cells in her body if there are any. This all means that the last 5 cycles of chemo have had a positive result. Good to know that the stuff works a little huh!!!
My mom made it in fine, and I leave tomorrow for home!
There are two people at home living with our kids that are people that deserve so much love and credit. Charlie and Jean have been so amazing to our kids and everytime I think about them I hope they know how much Jodie and I appreciate what they have done for our family. Poor Katie has been sick with a fever and sore throat. Grandma has spent some long nights with her. It has been such a comfort to know that grandma and grandpa are there to give her loves and help her feel better. We know that they will be rewarded for their love.
Jodie had a busy day today. She had an MRI, bone scan, and other small tests to asses where her disease is right now. We will not know the results for a few days but we hope they will have some good news. My mother Peggy is coming in from Denver tomorrow to take care of Jodie while I go home to see the kids.
We enjoyed a movie at a theatre last night. MASTER AND COMMANDER with Russell Crowe. Great movie, one that I could watch again. Sometimes hard to follow (I needed subtitles for the British accent).
Well that is all for today. Thanks to all the people who have sent fun notes of encouragement!
Matt & Jodie!
Sunday, January 18, 2004 11:30 PM CST UPDATE: TUESDAY! Today was a medium day, more labs (daily) to monitor Jodie's blood counts. Some things went up, some went down (good/bad). Nothing to worry about but the nurse said that it is a good thing that she is having a bone marrow transplant because her bone marrow is exhausted from being torn down and then trying to rebuild. We had some classes on food preperation and home care to get me ready to take care of Jodie when she is at the apartment. Julie and Sarah took the kids to the pool and a fun place called kid's zone. They had a great time. I PUT A LINK TO SOME PHOTOS OF THEM BECAUSE THEY ARE SO CUTE! Thanks so much to them and all the other people who do fun things with them while we are gone!
Sunday/Monday! We had a nice day off again today. We were able to go to church in our old hometown of Marysville and see so many old friends. One thing you can never replace when you leave a place is old friends you leave behind. Yes, you make plenty of new ones, but when you go back and see old ones, it reminds you of how much each person is unique and you remember how much fun you had together and what they meant to you during that period of your life!
We have a light day planned for tomorrow. The clinic has MLK Day off. Some labs, and then maybe we will catch a movie or something. We wish you all the best. Thanks for sending the pick me up notes!
Matt & Jodie.
Thursday, January 15, 2004 6:42 PM CST UPDATE: SATURDAY, 12:00noon. We escaped last night and had some mexican food with the Brown's and enjoyed being away from it all. Jodie had her labs today and we plan on doing some shopping and maybe taking in a harbor cruise. The cancer center gave us fee passes to a few attractions in the city. Jodie is feeling pretty good (a little sore still from her biopsies). We hope you all enjoy your weekend. It seems that it was -17 last night in Anchorage while we enjoy 50 degree weather! More tomorrow.
Matt & Jodie.
UPDATE: FRIDAY Jodie had a quick heart scan as part of her work up to make sure she is healthy enough to start. We are done with tests today so we plan to get away for a while (Thanks to the White's & Brown's who loaned us a car again). We have been very humbled meeting all of these people down here. It is obvious to me they are going through as much or more than we are. One lady has been here for a year with her son who has lukemia. More tonight!
THURSDAY:You all would be so proud of Jodie. She was so brave. She had a long day of labs, meetings with the pharmacist, nutrition specialist, and an EKG and this little thing called a BONE MARROW BIOPSY! I think one of the hardest things about it for her was that it was not until 3:00 PM so she had to think about it all day and she had nothing to eat all day accept a muffin and milk. (You can not eat for 6 hours prior).
She did so well, she was very brave and was hardly worried about it. It lasted about 30 minutes and aside from a few silly questions asked over and over she did not say or do anything to be embarrassed about under anesthesia. We are doing fine and miss the kids but understand they are doing well. Thanks to all who are making it possible to be here. We have been especially grateful for our friends at SBS for helping us be in this apartment. We take the shuttles back and forth and it is so nice to be 5 minutes away so she can catch a little nap during the long days.
Love Matt.
Tuesday, January 13, 2004 6:49 PM CST UPDATE: WEDS Night. I will leave Jodie's entry from yesterday because it has been a while since she has felt well enough to write her own. Things went well today. We just had labs and met with the Attending Doctor and talked about the general plan. It includes the two weeks of testing, followed by 5 days of chemo, 3 days rest, re-introduction of Jodie's stem cells and then up to a month of recovery in and out of the hospital. We will see how it goes. We also met with a social worker that they assign to everyone to help you get through this time. It continues to rain, just like you would expect! So enjoy the cold clear snow sunshine in Alaska!
Matt.
Hi Everyone!
We arrived in Seattle yesterday at 5:30 p.m. and got to our apartment about an hour later. It is really a nice place with lots of conveniences for the transplant patients who stay here. We took the shuttle to the grocery store this afternoon and now that we have a little food it is starting to feel a little more comfortable. I put up my pictures and things I usually take to the hospital right away so that helps too.
We had our first appointment at the clinic today along with a chest x-ray and blood draw. I swear they took a gallon of my blood. I don't think I have that much extra to spare! :) Once again we were so impressed with the SCCA. The people that work there are wonderful and their throughness is amazing. Tomorrow we meet directly with the doctor and will find out more about my exact protocol and might learn a little more about how long we will be here. The next day I have a bone marrow biopsy (Oh Joy!) and other tests. Thursday is supposed to be a very full day.
Now that I am here it is getting exciting to get on with the transplant. We have been able to meet a few others who are at the end of their transplants while on the shuttle today. It is great to see them smiling and know that they have come through this and are in good spirits.
We miss everyone back home (especially the kids!!!) and are hoping we will get to see friends here in the next few weeks.
Talk at you tomorrow!!
Love Jodie!
Monday, January 12, 2004 11:04 AM CST Well we had quite a send off last night at the McCarthur's home. I am sure we must have had nearly a 100 friends come over to wish Jodie well as we leave for Seattle today for her transplant. The amazing thing is that we know that for everyone that came last night there were probably 4-5 people who could not come because of location and having other things planned. We love you all and appreciate your love and support more than you know.
Jodie cried a lot of tears at the party last night, but even more as she lay in bed wondering how her kids would make it through this difficult time without their mother. We have told the kids that mom will be back in the spring when the snow melts. Katie woke up today and asked what makes the snow melt and wondered when it would happen (we had not even left yet). She also keeps saying she is so excited for spring time and for the snow to melt. "Daddy, we don't want snow, we want rain!" We know they will be ok and that time will pass eventually but it is so hard for Jodie to leave. I wish I could just go do it for her and leave her here with the kids.
We love you all, and will continue to update daily when possible. Thank you for all that you have done and have offered to do to help us through. Pray for the kids and Charlie and Jean too!
Matt.
Monday, January 5, 2004 5:28 PM CST UPDATAE: Saturday night. We had a great day. Today Jodie was feeling really good and we had a special family day. Today Hayden was baptized (he can now that he turned 8) and he was very excited and it was a great day. We went out to dinner to celebrate. Sunday is our last day in Anchorage.
UPDATE: Friday, Things are about the same today, not much new to report. We went next door last night to have Pizza with our neighboors the Bolte's and enjoyed their company. It is so nice to have great friends. Hope you enjoy the picture of Jodie's new hairstyle!
UPDATE: THURSDAY, Jodie got a blood transfusion of some red blood cells and like magic it lifted her energy level. She was able to stay up late and work on the computer playing with some photos of the kids to take with her. I think more than anything she just enjoyed having the energy to do something creative. She continues to improve which is good because we have a lot to do before we leave for Seattle. If they get the runways cleaned up in time!
UPDATE: Tuesday, Jodie got a haircut today! No seriously, she did! (Her wig). She had it trimmed up a bit. She was feeling well enough to go out on her own today so I would say that is a good sign!
Jodie continues to improve a little each day. Not much, but a little! Her blood counts are slowly coming up, so they would not give her another transfusion like she wanted (she just wanted the lift it gives her), but she feels a little better than yesterday. So we will wait for things to improve on their own for a while. She has been driving herself to her labs and she rests at home the for the rest of day.
Not much else to report today. Will add some more tomorrow.
Wednesday, December 31, 2003 1:43 PM CST UPDATE: SATURDAY/SUNDAY. Jodie is improving slightly this weekend (about 50-60 percent. She was able to go to a small party the other night, but she paid for it. She had to rest most of the day today. She is in good spirits, probably could use some more blood products but will have to wait until Monday for that.
UPDATE: Friday, Jodie felt a little worse yesterday than she did on new years. Too much sparkling apple juice I guess. So she rested most of the day yesterday. She has a little anxiety about the fast approaching date in Seattle.
UPDATE: NEW YEARS DAY! Jodie and our family enjoyed a really nice evening and the kids rang in the new year with pots and pans and a couple of broken wood spoons! Jodie was able to go and get red blood cells which elevated her energy. We had lots of finger foods and Jodie's brother and family came over to celebrate. I have many freinds in law enforcement who worked late and out of town in Valdez to keep us all safe. If you see any of them please thank them for the job they do!
HAPPY NEW YEAR! 2003 has been a dandy! More hills to climb in 2004, but we are glad to have had so many people help us up the ones we climbed in 2003.
Jodie is still hovering about 40-50 percent, less nausea but less energy. She will probably need some red blood cells today. We are hoping to have family over for New Years and maybe go see some fireworks tonight.
We wish you all the best new year, and hope that you safely enjoy yourselves tonight.
Love the Clarks!
Friday, December 26, 2003 6:24 PM CST UPDATE: TUESDAY 11:00 Not much change in Jodie today. She did go and get platlets yesterday but they did not seem to change her energy level much. She is still a bit on the green side but she has been able keep everything down. We are ready to send the kids back to school!!!!!
UPDATE: MONDAY 12:00 Noon, Jodie is doing about the same, a little less nausea but not much. Her blood counts have fallen pretty low so she will need blood today. She is hanging in there!
UPDATE: SATURDAY 9:00PM, Jodie is still pretty sick with naseua and is quite tired. She spent most of the day in her chair today and relaxed. She has wanted to call many of you to thank you for the amazing birthday presents but she has not felt up to it. SO THANK YOU TO ALL OF YOU FOR MAKING HER FEEL SO SPECIAL TO YOU!
THERE HAVE ALSO BEEN LOTS OF PEOPLE WHO HAVE RECENTLY SENT US MONEY TO HELP WITH THE COST OF JODIE'S TRANSPLANT. WE THANK YOU SO MUCH. AS I HAVE SAID BEFORE, WE PUT THAT MONEY IN A SEPARATE ACCOUNT THAT IS USED SOLEY FOR JODIE'S TREATMENT. IT WILL HELP SO MUCH AND WE JUST KEEP SAYING "CAN YOU BELIEVE THEY DID THAT FOR US???" IT HAS BEEN SUCH A RELIEF AND ANSWER TO PRAYER.
Happy Birthday to Jodie! She is 100x100/10-66. She has not been feeling to well today (about 40-45 percent) but she had a great Christmas and was able to be out with the family all day. The kids had a fantastic Christmas.
Jodie enjoyed some very thoughtful gifts from her friends and family. She wishes to thank you all! We hope that you all know how touched Jodie is each time someone does something kind for her. Her friends and family are everything to her!
Enjoy your weekend everyone!
Wednesday, December 24, 2003 3:17 AM CST MERRY CHRISTMAS EVERYONE! This will be one that my family and I will remember for a long time. Not just because Jodie has cancer but because ofthe many things that happened to us throughout the year to prove that so many people care about people all year long, not just at Christmas.
Each of you represent something special to us. Our paths have crossed various reasons and we have been blessed because of it.
We have not done the things we normally like to do this Christmas. Our gift giving has been a little curtailed, we have not sent out Christmas cards or a family letter, no plates of cookies etc. However, my family and I
wanted each of you to know that we think of you often and we appreciate our friendships and hope that next year we can enjoy the traditions that we enjoy as a family.
Here is a little about or family, (draft number 2).
Matt; I have been working as a Special Agent for the National Marine Fisheries Service in Anchorage, AK for almost a year and a half. I am a Federal Fish Cop, I save the whales, the fishes and the sea lions, and write
very expensive tickets after lengthy investigations to people who make lots of money and deserve them.
I left the Secret Service for quality of life
issues and to have more time to fly fish and spend time with my kids!
Jodie, well pretty much everyone knows about Jodie, so see her website to know more about her. Jodie is feeling a little better than this morning, but still has a ways to go
Tanner just turned 10, is a developing genius who still loves to read, is not much into sports or taking chances, but has a passion for learning and is growing into a fine young man. He has been a huge help during all of
this! He can usually be found curled up somewhere reading a book or playing Nintendo!
Hayden just turned 8. He is either going to need a bigger house to contain him or ridlin. He has so much energy that he could power LA in a brown out. We love him to death, he is also very bright and always running here or there. He is an excellent athlete and loves to learn.
Emmy is all girl. She turned 5 this summer and loves to dress up in whatever she can find. She loves kindergarten. She is just so fun to be around. (She only whines a little bit).
Katie is 3, she takes after Hayden a lot. If she knows you, she will talk your leg off and say the cutest things. I wish I could follow her around 24/7 with a video camera and send all the footage to Bill Cosby’s “Kids Say the Darndest Things”
We have a goldfish named “Jumper” that we have had for almost 2 years. (Doesn’t eat much, is easy to clean up after and does not bark!) He also reminds me of fishing!
MERRY CHRISTMAS to all, and know that we miss you and think of you all.
The Clarks in AK!
P.S. I think everyone knows about Jodie’s website but just in case it is www.caringbridge.org/ak/jodieclark our email address is clarksinak@hotmail.com
Tuesday, December 23, 2003 6:39 PM CST UPDATE: Tuesday 3:00 PM. I am afraid Jodie has had a set back. She was home for less than 24 hours, and was extreemly sick last night and today. Her doctor asked me to take her into the E/R to be evaluated. She was dehydrated and needed fluids by IV. She has not been able to keep anything down, and is just wiped out, physically and emotionally. It looks like they will let her come home again and we will see how she does. Jean and Charlie flew back in today after a short break in Salt Lake and Las Vegas. It will be nice to have them back.
Stay tuned for tomorrow's Christmas message from my family!
Saturday, December 20, 2003 1:40 AM CST UPDATE: MONDAY 3:00PM, We had a nice surprise today. Jodie called and said her doctor will let her come home today if she promises to eat and drink. She feels about 35 percent, she has been home for an hour and has had problems with vomiting already. I hope she did not come home too soon. She was so happy to be home. That is 5 down, one more to go. We got another 10inches of snow bringing our total to more than 50 inches in the last few weeks. It is the most snow people have seen in a long time! Glad to have a snow blower and four wheel drive!
UPDATE: SUNDAY MORNING, I called and talked with Jodie's nurse, she is not doing as well as yesterday about 50 percent. Her nausea is getting worse, but still no vomiting so that is good. I took her some chicken nuggets from McDonalds and she ate about 5 so that is also good. The kids and I went to Tanner and Hayden's piano recital. They did a fantastic job. Their mom would have been so proud. We videotaped it for her. Another foot of snow again this morning, I don't know where it is all coming from but we are expecting another foot tonight! (Charile and Jean are in sunny Las Vegas)!
The kids and I had a long day (FRIDAY), and I have another long one ahead tomorrow. But what a great day it was. A nice dump of 10” of snow made traveling around a little difficult.
Jodie is doing pretty good so far. Probably about 70 percent She has had her first few days of chemo and will remain in the hospital until at least Tuesday. She has not had much nausea and seems to be pretty alert and happy. I expect that she will begin to get sick towards Tuesday like the other time she had this cycle of drugs. We snuck her in some more Wendy’s for dinner tonight (hamburger and fries). Actually they don’t mind they are just glad she is eating!
We met with the SBS company today. I think that if anyone wants to see what Christmas spirit is all about, you should have been with my family today. I think they saw in our kids eyes and mine how appreciative we were of their kindness but knowing that not all of them were there I must say thank you again and again. You are truly wonderful people.
Thank you.
We finished the night with a party for my work that involved a nice potluck dinner and some time for the kids to build gingerbread houses. The kids had a wonderful time today and despite being exhausted they still wanted to play with some of their new toys from SBS and from the 12 days of Christmas.
Thank you all! Good night.
Friday, December 19, 2003 10:31 AM CST Today we woke up to another 3” of snow. I swear we must have 3’ out there from all of them combined. We took Jodie in on Thursday as promised, this time was a little different. I had school things for the kids most of the day so I just kicked Jodie out at the front door and said good luck! (She was feeling fine so she just wheeled her suitcase in like she was checking in at a four star hotel). I came back later and snuck her in some Wendy’s (a salad) which she knows she will not be able to have for a month.
Tanner missed the bus on the way home yesterday because he needed he forgot his coat so he ran back in to class to get it. It worked out ok but it made for a hectic afternoon.
I called Jodie last night about three times last night and she did not answer. So I called her nurse and they told me she was doing fine, and they gave her some knock out drugs. They said she was keeping her nausea under control and had been sleeping all evening.
I made the mistake of watching “JOHN Q” last night with Denzel Washington. What a depressing movie. He is a blue collar factory worker with limited insurance. His son needs a heart transplant. He makes enough money not to get state assistance, but his HMO won’t cover the procedure. So he takes over the ER and demands they give his son a new heart.
I guess it made me really great full for all the support my freinds, neighboors, stangers, and family gives us, and the fact that we have pretty good insurance. However, it makes you realize that something really needs to be done so that everyone gets the very best health care, not just those working for good companies or on Medicaid. Sorry for the soap box, it was just a subject a little to close to me.
ONE MORE THING! MY KIDS LOVE THE 12 DAYS OF CHRISTMAS. THANK YOU TO WHOM EVER IS RESPONSIBLE!
Wednesday, December 17, 2003 6:50 PM CST Sorry I have not made a new update for a while. I was just waiting for some news to put on here. Jodie was called today at 3:00PM and they said you can come in tonight or tomorrow to start chemo. The counts were high enough that she can start but Emmy has a school Christmas play tonight so Jodie wanted to see that. To start this late in the afternoon would not really make that big of a difference so she will start tomorrow.
This morning Emmy, Katie and I were discussing what we should leave out on a plate for Santa. I suggested the usual cookies, and carrots for the reindeer. Katie protested, "Dad, I think we should leave out some scrimp (what Katie calls Shrimp). I think he would like that." She said that if he only took one bite that means he does not like it, but if he eats it all gone than he likes it!
That is about all for now. I will add more tomorrow.
Monday, December 15, 2003 11:01 AM CST **UPDATE** Just as we were about to leave for the hospital Jodie's Doctor called and told us that Jodie's blood counts are still not high enought. She said the last cycle of chemo seems to have really devistated her bone marrow. (which is the goal) and that is why it is taking her so long to recover. We are shooting for Wednesday. We were really hoping to get this moving but it is not in our hands. It was hard for Jodie because she was getting mentally prepared to do it today, and now she has to wait...I think you understand.
We had such a nice weekend. Hayden had
his party and in his words, “It was the best party of my life!” So that made us feel good that he could have such a nice time. They wore me out in the pool though.
We are the recipients of the 12 days of Christmas. Today will be day number three and our kids are loving it. They jump and scream when they hear the doorbell ring and sprint down the stairs. We have made them promise not to try and catch the people in the act. Thank you to all for your Christmas spirit.
Well the dreaded day is finally here for Jodie. She has been doing so well and today she goes back into the hospital for a week.She is ready though because she knows it gets her closer to her goal.
Sometimes it is almost hard to tell anything is wrong with her when she has a good day. She still has a lot of pain where her surgery was and gets worn out easy. Sometimes she has her old enthusiasm and smile back. She got to see her friends last night for a Survivor Party at Kim's house. I know she had fun. Charlie and Jean are finally starting to feel better (they had some awful flu cold thing that lasted over 2 weeks). It is just in time for their trip to Salt Lake to see family. (They leave Tuesday for 8 days).
Well that is all I can think of for now. Hope you all had a great weekend.
Saturday, December 13, 2003 0:45 AM CST HAPPY BIRTHDAY TO HAYDEN! (HE is 8 and the one standing in front of Jodie) We are going to H20ASIS (indoor waterpark) to celebrate! Jodie is making a cake as we speak. It is so nice to see her feeling so well. It is short lived but what a weird turn of events that Jodie did not start when she was supposed to. Kind of makes you wonder, maybe our picture is limited to our own view in our own time frame.
We had a good time tonight at our church Christmas party. It was designed to feel like home. The kids had so much fun. We started in a room with a couple of christmas carols, then to a room making paper chains, then moved to a room where they decorated cookies. Then to a room to tell family traditions, then to a room to make snow flakes. Then finally to the gym where the kids decorated a tree with the chains and snowflakes while singing carols. Then the young men and young women acted out the nativity sceene. It was such a nice night. Glad that we could all be together as a family.
More on Sunday!
Matt.
Thursday, December 11, 2003 5:16 PM CST Kind of a late entry today! Sorry! We found out that Jodie will not start until at least Monday so the good news is she was able to go to a nice retirement dinner last night and she gets to enjoy Hayden's birthday on Saturday, plus Jean and Charlie are still not feeling well so it gives them some time to recover from their sickness.
The kids are so excited about Christmas. Last night when we got home from our dinner Jodie went in to kiss Katie goodnight. Katie had a small Christmas package under her covers that she had removed from under the tree that she knew was hers. She said, "Mom, I am just going to sleep with this tonight ok?" Jodie had to explain that she had to put it back under the tree. It was cute!
That’s about all for today
Wednesday, December 10, 2003 11:41 AM CST Not much new to report today. More snow, more work, (good snow man snow though). Jodie has labs today that will tell her if she starts round 5 tomorrow. We will find out later today. She is still doing pretty good.
Charlie and Jean have come down with a severe cold/cough. It has been hard for them and we hope they will get through it soon. Have a great day everyone. Thanks for checking in.
Matt
Tuesday, December 9, 2003 11:21 AM CST I am back to full strength and so are the kids. As of yet Jodie does not have any symptoms of the flu and we are hoping it stays that way. It is a good thing she was feeling well (at 80 percent) yesterday because I was no help that is for sure. We are still waiting for Jodie’s blood counts to come up to a level that is high enough for her to start the next round. We are two weeks behind schedule (which will effect Christmas and the start date of the transplant in January).
We hope you enjoy the picture of our family by our tree. As you can tell we managed to get that put together on Sunday before I got sick!
Have a great day everyone!
Matt.
Monday, December 8, 2003 1:48 PM CST Well, the flu got me! I had a hard night last night. Who is next? We hope it passes Jodie by!
Hope you will forgive the short update.
Matt.
Sunday, December 7, 2003 12:12 AM CST So much for the flu shots! Hayden had a slight case of it on Thursday, Emmy had it yesterday and Katie developed a case of it at 2:00AM. She said her tummy hurt so since Emmy was feeling better I switched the bowl from Emmy's bed and gave it to Katie. Luckily she (at the young age of 3) managed to use the little bowl I had given her! I am not feeling so hot either. It seems to be a 12-24 hour bug.
Jodie is still feeling good, she took the boys to church today and was excited to be going. We plan to put our Christmas decorations up today. Looking forward to that! Hope you all enjoy your Sunday.
Love the Clarks!
Saturday, December 6, 2003 12:05 AM CST I think Jodie has made her 80 percent mark! She was able to do 2 hours of Christmas shopping and play scrabble last night, drive Hayden to his party….so it was a good day for her. The reason it will stay 80 percent not a 100 is she still experiences pain where her surgery was done. She also gets tired after doing these things. But at least she is able to do them. We saw the oncologist yesterday and like we thought, she said chemo no earlier than Wednesday due to her low platelet counts. They are not so low that she needs platelets, but too low for chemo. She has to wait for those to rebound on their own. If they gave her platelets that would be an artificial number.
So, we wait! We have a busy day today. Many of you may have seen Tanner’s picture in the paper. His class is involved in a LEGO ROBOTICS competition today. He and four of his classmates have designed a robot that is made of legos, and programmed by a laptop computer. The robot is placed in a small arena and must do four complex moves to move and transport objects. I went to his class and watched the kids working on them and I was very impressed. Some of the kids look like future engineers.
Well, enjoy your Saturday. We will post more tomorrow.
The Clarks!
Friday, December 5, 2003 12:55 AM CST HAPPY FRIDAY! Today is a busy day for me so I have to keep it short. Jodie continues to improve and feels a little better today. She is getting closer to that 80 percent mark that she usually gets to enjoy right before chemo starts.
We found out yesterday that her blood counts need to improve before she can start her next round. I guess they have to let her build up enough red,white and platlet cells before they start tearing down! Why hurry you ask? Because the sooner she gets started the more time she will have to recover by Christmas. We just have to hope things get moving.
As always, we thank you for your love and support!
Matt & Jodie.
Thursday, December 4, 2003 10:44 AM CST Jodie is improving a little bit each day. It has certainly taken longer to recover this cycle but I have noticed some improvement. I would say she is somewhere in the 70-75 percent range. She always does better in the evenings than the mornings. Kind of strange huh? You would think it would be the opposite. (After a good night’s rest!)
Her counts are finally up high enough where she can have fresh vegetables. (I guess when they are low the chemicals and toxins in vegetables are very bad for her). So she is excited to have a hamburger with lettuce and a salad! Funny how we take the little things for granted! (I WOULD NEVER EAT A SALAD!)
Well, that is all I can think of to write today. Have a good one!
Matt.
Wednesday, December 3, 2003 10:42 AM CST Seasons Greetings! Jodie has improved slightly to about 60 percent (at least she was last night). The red blood cell transfusion gave her a lift as usual. She insisted on doing some laundry to help out last night while Charlie and Jean were out last night. She swore to me that she was not doing too much. She is still in bed as I am writing this so I am not sure if she overdid it last night or if the blood counts have fallen again. I am taking her back in for her scheduled labs to check her counts.
Not much else is new to report today. We have spent the past few days in a cold spell again. Yesterday the high was 0 and the low was -15! It is starting to warm up today because we are expecting more snow. We had 28 inches in November and the average is 8 inches so we are enjoying the extra moisture.
I continue to work about 4 hours a day, which works out perfect for us. I am able to help the kids get ready, take Jodie to whatever medical appointments we have in the morning, and then work from noon to 4:00. Just in time to get home and help the kids with their homework etc. I found out Yesterday my co-workers donated the 450 hours of leave I will need to keep this up, and travel with Jodie to Seattle in January and February for the stem cell transplant. Thank you everyone for helping my family that way. Many Federal employees have continued to express a desire to donate leave. I have reached a point where they are turning people away. If you would like, you can donate leave to Jean (Jodie’s mom). She is going to start leave without pay soon and will stay with us until at least March. She is a federal employee and is part of the leave donation program. If you need more information send me a private email and I will get you her timekeeper’s information.
Well, that is all for today. Thanks for checking in.
Matt
Tuesday, December 2, 2003 11:10 AM CST When Jodie found out I said she was 70 percent she said I was clearly mistaken. She said she has been feeling 40-50 percent almost all of the time. She did spike one day to 70 percent right after she got platelets but within a few hours she said she fell back down. I personally think that the third cycle of chemo did such a strong job that she never really recovered enough. If you remember the third cycle consisted of different drugs than the first two. So when she had the fourth cycle it really wiped her out again. The fourth cycle used We were not able to do the decorating like we planned. We will wait until she feels better (maybe this weekend). the same drug as the first two. It has definitely taken her longer to recover the last few times. She is going in for a red blood cell transfusion today to see if that will make her feel better. It is so sad to see her so run down. Her skin is pale, and when she does something like climb the stairs it just wipes her out. Just part of the deal I guess.
On Monday she is starting the 5th and last cycle of chemo in Anchorage. It will be the same drug as the third so now she is sad that she won’t be better by Christmas. We will just have to wait and see. **IT IS IMPORTANT TO NOTE THAT NUMBER 5 IS NOT THE LAST CHEMO.** The last one is the one in Seattle in January. This one is the ultimate dose, that will decimate her to the point that she needs the stem cells to bring her back. So this is just the last one in Anchorage. Hopefully that one will kill whatever these first five did not get.
Well, I know this all sounded a little down. We are doing ok and things will improve. Try not to worry. I just want these updates to be as accurate as possible.
Love you all! Matt.
Monday, December 1, 2003 10:38 AM CST We had a nice weekend and I hope all of you did as well. We just had a few errands to run and that was about it! Jodie is still hovering between 75-80 percent. She would be better if not for her energy level due to low blood counts. She did get some blood platelets on Saturday which helped her for Saturday. By Sunday she was tired again. She has another blood draw today that will tell her where she stands! I am guessing she will need some more blood products by the way she looks. She had to stay home again from church yesterday due to a low immune system.
We have the whole week off of chemotherapy so we plan to put up our Christmas tree and decorations this week. I am surprised it is already here!
I almost forgot. Someone gave a friend and I tickets to the Great Alaska Shootout on Saturday night which is an NCAA Basketball tournament. We got to see Duke and Purdue play for the championship of the tournament. I had a great time (that is big-time basketball for Alaska).
Well stay tuned for tomorrow’s edition of As The Clark’s World Turns!
Friday, November 28, 2003 11:21 PM CST Hope you all took my advice and enjoyed some pie! I did! What a fantastic meal! It was great to be with family, and great to think about all our family in places far away. We love you and wish it was easy to rent a gym and all be together at once. I would love my kids to meet all of their cousin's and visit with everyone.
Jodie was able to play a few card games and did pretty good. She still has a pain that radiated down her leg but it is getting better. She will need some blood platlets on Saturday. She has really pale skin and needs an energy lift! Other than that we will probably have a quiet weekend and start preparing for Christmas. We may have some time next week to do a little decorating and gift buying before Jodie goes back into the hospital for chemo. That will be one week from Monday.
Thanks to a special family who came and picked up the kids on Wednesday and took them to Chuck E. Cheese so we could have a quiet night. Just another random act of kindness that so many people have given us.
Enjoy your weekend!
Wednesday, November 26, 2003 1:31 PM CST **UPDATE** WEDS 6:00PM JODIE DID COME HOME! WE HAD STEAK AND SHRIMP TO CELEBRATE! (Just to get ready for tomorrow's turkey!) Someone came and took our kids to Chuck E Cheese, can you believe what a nice thing for someone to do. Our kids were so excited! Have a great T-DAY!
How do I start today? Jodie is coming home thanks to all your prayers. She is feeling pretty good but still struggles with some type of pain in her abdomen and radiates down into her leg. The tests yesterday were all fine, but they decided to do a few more today on her femoral artery to make sure she does not have a blood clot.
If the tests are clear she can come home. It has been a tough week for me, and like many as Thanksgiving approaches I have been thinking. At times it has been difficult to feel thankful about our situation. Then at other times I have been overwhelmed with feelings of gratitude that we have so many medical options and treatments available at this time in our society. None of them are a guarantee but they are much better than the options of 20 years ago!
I am grateful to have my mom and dad, & brothers to support me. I am grateful for Jodie's side of the family, not only for how they have been there for Jodie but for me also. Our family, friends and neighbors, (co-workers are included in my friend category) have made so many sacrifices both small and large. You have told us many times that they are not sacrifices but rather opportunities. I know many of you are going through your own difficult trials, some are well know, others are private. Others have had wonderful and positive events recently. We are thinking about and praying for you and your families as well.
I wish you all a wonderful time with your families this weekend wherever you are! Enjoy a slice of pie or two, or three, without guilt!
The Clarks.
Tuesday, November 25, 2003 12:01 AM CST Good morning everyone from the cold North! We ended up with about a foot of snow from several different storms this weekend and now it is cold and windy! Expected to hit -5 to -10 tonight.
I spoke with Jodie and she said she is doing a little better than yesterday so we will call that 75 percent! She has had some abdominal pain that gets pretty bad when she stands up. They were not sure if it was something with her spleen, or liver as a complication from chemo. They gave her a CT yesterday, which was negative. They have an ultrasound scheduled for today. She will also need more blood platelets because those are low again. We hope to have her home before Thanksgiving! Right now there is a good possibility she will come home tomorrow but we have to see what happens with this pain.
We have said it so many times but we always are so uplifted by your support. We are all growing weary of this trial, we wish we could have our normal life back. There have been many times where all of us have had private moments of tears and said “I just can’t do this anymore!” I know Jodie and I have had many of those moments. When we see and feel all of your support, we realize we can and must go on and be as positive as possible. Thank you.
The Clarks/ Baileys!
Monday, November 24, 2003 10:43 AM CST We delivered some of Jean's home cooked meal to Jodie last night. She was feeling about 70 percent and should be able to come home today. She was happy and glad to see the kids for a short visit. She wanted me to thank Curt and Jeffery for the extra nice thing they did last night. We appreciate your service to others.
I will update later today when we find out if she is coming home or not. Until later.....
UPDATE**Jodie is not coming home today. She still had a fever last night, maybe tomorrow?
Saturday, November 22, 2003 10:19 PM CST Hi Everyone. I just got back from visiting Jodie (7:00PM Saturday). She is happy and in good spirits. The kids and I picked up Wendy’s (she had a baked potato and sour cream) and went and had dinner with her. She is still has a fever of 101 and has had plenty of blood products to lift her energy. She probably will not be home until Monday. I had a nice day with kids. We played in the snow and did a little sledding down our driveway. The kids did some snow angels and just had a great time. It is so beautiful here after a snow. We almost always have a clear cold week after each snow and the mountains and trees are covered in a clean white blanket.
My brother Teegan said I could not say anything about his new daughter that was born last night but I sure loved getting the news. The number of cousins continues to grow and grow for our kids! But I am not supposed to say anything…..but I am such a proud uncle how can I not! So just pretend you did not read this!
I will probably not update until Monday when we have more news. We love you all! Have a great weekend! Thanks to those who dropped a few notes our way lately. They always lift our spirits. We know that there are almost 50-100 people each day who visit and don’t leave notes. We thank you for supporting us even in your silence!
Friday, November 21, 2003 10:42 AM CST **UPDATE** Friday 8:00PM, Jodie went to the hospital tonight for a blood/platlet transfusion but she had a fever so they admitted her to the hospital for at least a day or two. This happened with the first two treatments that were like this one.
Friday 9:00AM Things went really well yesterday with Dr. Chung the Radiation Oncologist. Both Jodie and I liked his personality and he seemed to be very thorough. Best of all, after reviewing Jodie’s films he felt like he could do the job with the IMRT machine he has in Anchorage. He said it is the same machine that is in Seattle at the U of Washington. He actually said after a few minutes that he felt it would be better to use conventional radiation because he felt that a pretty large area needed to be irradiated. He wants to do the area where the original tumor was and the entire bone where the new tumors are. This area would be about the size of a soda pop can. He said he would call and talk to the Doctor’s in Seattle and see why they wanted to use IMRT. After listening to him, I leaned back towards conventional radiation. The goal is to kill any cells that Chemo did not get too, and there is a good chance there is some left from the original tumor and there may be some cells near the new tumors that are too small to see yet. So, in all likelihood we will do the radiation up here. That will be one month less we will have to spend in Seattle. (We will still be down there for about 6-8 weeks).
Jodie flirted with a fever last night (99.6-100.3). If it goes above 100.4 we are required to go into the emergency room because she does not have any white blood cells to fight that. But for some reason it just hovered below the threshold and we did not have to go in. Thank goodness! I was so tired and going to the ER is no fun. You sit around in the waiting room with your neck snapping back as you fall asleep. Then you go sit in the ER treatment room for 4-6 hours. Anyway, she is feeling about 60 percent still.
That is about all. Charlie and Jean are enjoying the snow and the kids, and as usual they are helping more than we could ever thank them for!
We love you all, and will add more tomorrow!
Thursday, November 20, 2003 10:59 AM CST Not much new to report. I am going to keep my greeting to my co-workers (for a few more days) at NOAA that are probably visiting this site for the first time. I wanted to thank you for your concern about my family. I have found this a great place to work because of the people in the organization. I truly appreciate the leave you have dontated because it will make a huge difference in our lives. It will allow me to help my wife get through this time and still help take care of my kids. I have been taking the entire day off the weeks that she is in the hospital. Half a day the first week that she comes home (Because of all her follow up doctor appointments). Then I can usually work the whole day the second week she is out of the hospital. Then it is time for her to start all over again. When she is down in Seattle for the Bone Marrow transplant I will need to be with her and on leave almost that entire time. Just wanted you to know that it will be used sparingly.
Hi Everyone, today is kind of an important day today. We are meeting with a radiation oncologist here in Anchorage to determine if he can do the type of radiation she needs here instead of in Seattle. Certainly we want her to have the best treatment available and we will fly anywhere to get it. However, if we can do that here, that is 3 weeks less that we would have to be in Seattle so it would obviously help to do it here. We originally heard about a technique called the “Cyber Knife” used in San Francisco.
We learned after speaking with the doctors that normal radiation shoots a beam from the front and back of the body to the area that you need it. There is another kind called IMRT and they have it in Seattle and Anchorage. (Don’t ask me what it stands for, I forgot!) Anyway, it shoots a beam from 6 beams from different directions to the area that you need it. Cyber Knife shoots it from 20 areas and the beam is super focused to a pinpoint. The doctors told us that the Cyber Knife is used to irradiate a very small area like if you had a tumor right on the spinal cord or in the lung and you wanted to avoid burning other tissue. This is not the case with Jodie. She has a 2” spot that needs to be irradiated on the spine where her original tumor was taken out and two other spots the size of a quarter on two separate vertebrae. So IMRT is what we are hoping to find in Anchorage.
All is well considering. Jodie is doing about the same. Still about 60 percent, her blood counts are so low. Her face looks very pale and you can see how tired she is. Jodie and I watched the Bachelor choose the wrong girl last night! (She made me watch it and I was just being a supportive husband! Ya Right!) Anyway, he should have chosen Kelly Jo! What a wimp, he wouldn’t even propose! He left himself an out by putting the ring on her right hand! Oh, the important things in life!
That is all for now! I will update the findings later if possible.
Tuesday, November 18, 2003 11:37 AM CST Not much new to report. I am going to keep my greeting to my co-workers (for a few more days) at NOAA that are probably visiting this site for the first time. I wanted to thank you for your concern about my family. I have found this a great place to work because of the people in the organization. I truly appreciate the leave you have dontated because it will make a huge difference in our lives. It will allow me to help my wife get through this time and still help take care of my kids. I have been taking the entire day off the weeks that she is in the hospital. Half a day the first week that she comes home (Because of all her follow up doctor appointments). Then I can usually work the whole day the second week she is out of the hospital. Then it is time for her to start all over again. When she is down in Seattle for the Bone Marrow transplant I will need to be with her and on leave almost that entire time. Just wanted you to know that it will be used sparingly.
Hi Everyone, today is kind of an important day today. We are meeting with a radiation oncologist here in Anchorage to determine if he can do the type of radiation she needs here instead of in Seattle. Certainly we want her to have the best treatment available and we will fly anywhere to get it. However, if we can do that here, that is 3 weeks less that we would have to be in Seattle so it would obviously help to do it here. We originally heard about a technique called the “Cyber Knife” used in San Francisco.
We learned after speaking with the doctors that normal radiation shoots a beam from the front and back of the body to the area that you need it. There is another kind called IMRT and they have it in Seattle and Anchorage. (Don’t ask me what it stands for, I forgot!) Anyway, it shoots a beam from 6 beams from different directions to the area that you need it. Cyber Knife shoots it from 20 areas and the beam is super focused to a pinpoint. The doctors told us that the Cyber Knife is used to irradiate a very small area like if you had a tumor right on the spinal cord or in the lung and you wanted to avoid burning other tissue. This is not the case with Jodie. She has a 2” spot that needs to be irradiated on the spine where her original tumor was taken out and two other spots the size of a quarter on two separate vertebrae. So IMRT is what we are hoping to find in Anchorage.
All is well considering. Jodie is doing about the same. Still about 60 percent, her blood counts are so low. Her face looks very pale and you can see how tired she is. Jodie and I watched the Bachelor choose the wrong girl last night! (She made me watch it and I was just being a supportive husband! Ya Right!) Anyway, he should have chosen Kelly Jo! What a wimp, he wouldn’t even propose! He left himself an out by putting the ring on her right hand! Oh, the important things in life!
That is all for now! I will update the findings later if possible.
Monday, November 17, 2003 11:01 AM CST Back to work everyone! It's Monday! I might even go in for 4 hours today if it works out. I have to take Jodie in for labs (they do that every other day to check her blood counts). Jodie is still feeling about the same 30%. She is still really tired and has lots of nausea. She will probably continue to decline until about Thursday or Friday before she rebounds. She stayed home from church yesterday and slept almost all afternoon in bed.
It is sooo cold right now. It has been getting down to -10 each night and a high of about 5-10 in the day. Our windows have ice on the inside from the condensation freezing. But is so clear and beautiful when it gets like that hear with all of the snow. Our days are getting shorter. Our sun rises at 9:15AM and sets at 4:15PM.
We are so thankful for all of your love and support and we hope you have a great day. Thanks for checking in!
Love Matt and Jodie.
Saturday, November 15, 2003 11:54 AM CST UPDATE: Sunday 2:00PM, Jodie has gotten pretty sick the last 24 hours. She is flirting with a fever and vomiting. She has been very lethargic and tired. This is part of her typical pattern with this chemo so don't be too worried. Just wanted everyone to have the most updated info.
Saturday: Jodie is home and doing well. She got home at about 1:00PM yesterday (Friday) and was very tired. She slept most of the day and night but did pretty well. She stills struggles with nausea but takes ATIVAN for that. She has decided that DASANI bottled water is easier for her to drink so we bought a bunch of that for her to drink.
It was great for us to have her home again. The kids and I are going to do some really fun stuff today. Haircuts, flu shots, and maybe a little sledding.
I have had a few requests for more pictures (sorry that we have had the old ones up for so long). I will work on that this weekend.
We love you all, no matter if you live 5 minutes or 5000 miles away from us, we think of all of you often.
Love Matt & Jodie.
Friday, November 14, 2003 10:39 AM CST Jodie called me last night at about 8:00PM and told me she was done with round 4! She said that she did have a problem keeping some left over chinese food down but hey, even I don't really enjoyed left over chinese food! It never taste as good as it does right out of the box!
Anyway, I am going to pick her up this morning at 9:00AM. We have a quiet weekend planned. Katie went to her school (Vicki's house) yesterday. She enjoys that so much! The rest of the kids are doing well at school. My boys seem to have a problem with loosing gloves but other than that...
We all went to Wayne's Texas Bar-BQ last night for Alek Lowry's birthday (the kids cousins). We had a nice time.
I hope you all have a great weekend.
I will add more later.
Thursday, November 13, 2003 11:02 AM CST Another good night for Jodie according to her nurse. She was able to sleep through the night is still doing about the same which is pretty good. (about 30-40%). She feels like she is on the verge of throwing up when I am with her but she never does. She seems really coherant when you are with her but she has a hard time remembering what happened yesterday. On Wednesday, I was telling her about something I had said during our visit on Tuesday night. She said, you weren't here last night because I watched fear factor and you weren't here. I said, "Jodie, Fear Factor is on Monday night, today is Wednesday." So the drugs the keep her on to control the nausea kind of effect her memory. But that is ok since there are not many fun things to remember for her during that period.
She is supposed to finish up the last chemo tonight, and should come home from the hospital tomorrow.
The kids and Grandma and Grandpa are doing well. We enjoyed playing in the snow a little last night. We have been joking that we need to make Grandma drive in the snow (she is a little hessitant) or she will end up on the show she loves to watch (STARTING OVER, a show where people have issues they need to overcome while living in some house).
Anyway, that is all today unless something else noteworthy happens!
Matt.
Wednesday, November 12, 2003 1:43 AM CST We had a great day today (the kids and I) we went to H2Oasis an new indoor waterpark in town. It was the first fun outing for the kids and I in a long time. We went with the Lowry's. Katie and Emmy did fantastic in the water.
Jodie had a pretty good day, she is still about the same as yesterday. She had a violin seranade by some young women from church, a visit from her mom and sister in law Kim. It was nice.
I will update if there is any change tomorrow.
Goodnight!
UPDATE: Jodie is doing about the same still. They are doing a good job of keeping her nausea under control. (She still has it just not enough to actually cause vomiting).
She had me bring her some Chinese food but she did not eat much of it. We had a nice big snow today. Charlie drove his school bus all over the snowy icy roads with no problem.
c-ya tomorrow.
Tuesday, November 11, 2003 11:56 AM CST I just called and spoke with Jodie's nurse. She said they ended up starting her Chemo late in the day (at 8:30 pm) which is a bit frustrating for her since she checked in at 11:00AM. Anyway, they said she did ok last night, very nausiated but she hasn't had trouble with vomiting yet. They have her sleeping on ATIVAN, with two more powerfull drugs waiting in the wings if she starts to get really sick. We all have the day off (Veteran's Day) so I am going to try and do something fun today.
We got our first official snowfall this year (1 inch!). We were only one day from tying the record of going the longest without snow in Anchorage. The kids were so excited. They actually ran all over our deck with bare feet because they liked to see their footprints (toes and all) in the snow! Silly girls!
I will ad more later if there is anything new to report.
Love you all.
Matt.
Monday, November 10, 2003 11:01 AM CST Happy Monday everyone!
We are headed to the hospital to start round 4! Jodie is not looking forward to it. Some people are not aware that Jodie is an inpatient for all of her chemotherapy. She will not be coming home until Friday.
I was talking to her dad yesterday and something struck me as kind of funny. With most injuries/problems you go to the hospital, (say like with a broken leg) and you might require some surgery, a short hospital stay, then some recovery time at home, months of physical therapy and things continue to get better until one day, it is as good as new. With cancer you keep showing back up when you finally are feeling better and the doctor says, how is your leg feeling? Good! Let me see the other one, Wham! She breaks the other one! It is a crazy process where the cure is almost worse than the disease.
Jodie was able to go to church. Something she has not been able to do for almost a month and a half. It really meant a lot to her. Most of you know that we are members of the Church of Jesus Christ of Latter Day Saints (LDS, Mormon). If you don't know much about what we believe you can just ask us if you want to.
One thing we believe is that this life is guaranteed to have challenges and trials, and eventually death for all of us at some point. Bad things happen to good people, and vice versa. Whether you have religious convictions or not, some things have grown pretty clear to us. These trials cause us to examine who we are, why we are here, and what is going to happen to us after we die. How we handle these trials is what the test is all about. It also gives other people the opportunity to help you through them.
One thing has been very clear to us. Having something (faith) to hold on to and good people around us has really helped us get through this. We have at least 500 acquaintances from different wards (congregations),and all our friends and neighbors from all the places we have lived has really helped us. We could not do it without you. Many of you have expressed that you are praying for us. That is a tremendous lift to all of us. We believe that it helps! What we have decided is that we have to do all that is medically necessary and available and possible, then leave the rest up to faith. That is all any of us can do. Thank you for responding to our needs in so many ways. We hope that everything you have done for us is rewarded back to you 10 fold in one way or another. We believe it will be!
Will add more tomorrow!
Matt.
Friday, November 7, 2003 2:44 PM CST Not much news to report today. (No whale stories). Jodie is doing pretty good. She made us a really nice dinner last night which I know made her feel like she was contributing and being the old mom she misses! It was a really nice time together.
She has also been able to go the kids parent teach conferences and that has been a nice treat for her as well. The kids are all doing such a good job at school. Even Katie thinks she goes to school (at Vicki Lambertson's house).
Anyway, we are going to just enjoy the weekend and get ready for Monday when Jodie goes back in the hospital for more Chemo.
Thanks to everyone who continues to send love and support in many ways. You each know all the simple things you have done and we appreciate them!
Matt & Jodie.
Thursday, November 6, 2003 11:34 AM CST Good morning everyone! I had a fun day yesterday. Since Jodie is feeling better and does not start Chemo until Monday I worked a normal day yesterday. At least it started as one. At about 11:00AM I got a call from passing motorists along the Seward Highway from Anchorage to Homer that there was a Beluga whale stranded on a sand bar. (One guy said he is either dead or sleeping, do they sleep?)
By the time I got there it was about 12:30. I began looking for the whale with binoculars as the tide was rising. Then there she came floating about 200 yards of shore. Then I called my boss, as I looked up while still on the phone, Channel 2 news was standing there asking for an on camera interview. So I gave them one. (It is a very uncomfortable feeling knowing that if you say something stupid it will be on the 5:00 news).
Well, the whale finally floated close enough to shore for me to grab it by the flipper and push it in to shore. She was dead. I called the biologists so they could come and do an autopsy. Well that took them about an hour and half. The news crew left and I am up to my waist on a rocky shore holding the whale as the waves and rising tide begin pounding me and the whale (all 13' 1000 lbs of her) on the rocks. The biologist calls and says, "We will be there in an hour so hold on!" I had to let go to talk on the phone.
Well the whale floated out 2',then 5' and I couldn't get her back. It floated around the bay for about 30 minutes as I chased her up and down the shore hoping for another chance to bring her back. Finally, after about an hour it came close enough to shore for me to pull it back in. the whale died of natural causes, my coworkers got a good laugh and said it was the biggest fish I will ever land twice! It was fun to be back at work.
Wednesday, November 5, 2003 11:59 AM CST Howdy everyone! We had a nice little party for Tanner and Katie last night. We were able to have the Lowry's over to join us for a special dinner (Grandma's clam chowder that Tanner ordered special) and cake and ice cream. It is so nice to have family around us. For many years we have been on our own away from any family. Katie was thrilled to get a new baby doll, and Tanner was excited about his new Yugio cards (latest rage). Jodie was able to bake cookies for Tanner's class and pick out the kids presents. (That was a lot for her in one day!)
Jodie has a pretty bad cold (not sure if that was because of her low imunne system or not). One thing is for sure, if she didn't have that she would be feeling a lot better. It has also done some damage emotionaly as well. She was really looking forward to some "quality time" with the kids.
She will start Chemo again on Monday so she has a little reprieve.
I am getting some time in at work for the rest of this week which is good therapy for me.
Thanks to all!
Matt.
Tuesday, November 4, 2003 11:31 AM CST Well we won the lottery and made it home early. We had an 11:00PM flight that would have got us into Anchorage at 2:00AM. SO, we went to the airport to try and "Standby." We got there at 2:00PM. We tried for a 3:30PM flight. When I learned that there were 73 people on Standby, and the lady said "I will not roll anyone over to the next flight until after the plane has left, and then you can come up and stand in line I sprung into action!" Being a seasoned traveler with the Secret Service I knew that the last person that would help you is the frantic lady at the departing gate. I walked a ways, found a employee who was not busy, and explained our perdicament. He set us up for the 5:00PM flight and told us we were in the top 10 for that flight, but there were only 2 empty seats as of now.
When they began to call people for standby, they called 5 people ahead of us, and then Jodie and I were the last ones. We franticaly ran down the Jetway knowing that we would get to see our kids that night! We were so excited!
We arrived to the girls in the back of Charlie's truck screaming in joy as they saw their mom! We were tired, but glad to be home.
It is Tanner's birthday today, and we can finally celebrate Katie's 2 weeks late. Thanks again to all who helped us through our latest journey! Jodie is back to about 80% and is doing really well. We are not sure when she will start her next chemo and drop to 20% again but it should be within the next few days.
Matt.
Monday, November 3, 2003 10:14 AM CST Today Jodie had her last lab test done, and she is looking forward to coming home. She will have the Merherker pulled out of her neck/shoulder (a 10" catheder) and maybe some blood proudcts added and we hope to be on our way. We have a midnight flight out of here but we are going to try standby to see if we can get home sooner. We had a nice dinner with the Brown's last night, played some cards etc. It was nice to see them.
Jodie developed a cold somewhere yesterday, but she is still feeling pretty good. Looking forward to seeing all of our freinds and family and getting out of the traffic!
Love Matt and Jodie
Sunday, November 2, 2003 10:55 AM CST MISSION ACCOMPLISHED! Yesterday (Saturday) Jodie collected 1.6 million bringing our total to 4.9 million. They are making us wait until Monday to take out the Merherker catheder, and gave us the option to collect more cells, so we did! SO today Jodie is hooked up to the vampire machine one more time. For the last week, I have been giving Jodie 6 shots per day of Nupagen in her stomach to increase the CD34 cells. Isn't she amazing! Now we will have more than enough cells to do the transplant, and if there is a problem or it does not take, they can give her the extra ones we saved today. So, THANK YOU TO ALL WHO HELPED US GET THROUGH THIS! They have said many times that this is the really tough part of the process.
Well, we moved out of the Sheraton into the University Plaza Hotel. Sounds great right! MOTEL 6 sound pretty good right now to us! It just made us really appreciate my mom (Peggy) and the American Cancer Society for putting us up at two clean hotels! This is just for one more night.
We talked to the Kids yesterday and really enjoyed that. It sounds like they had a great Halloween. Thanks to those who helped make that happen in our absence. Tanner was a great Harry Potter, Hayden was the Royal Knight! Emmy was a great circus clown, and Katie, Katie has been a giraffe for the last month (and Halloween too!) We were worried she would wear that costume out before Halloween.
Well, we come home sometime Monday night! Love to all. I will try and do one on Monday.
Matt and Jodie.
Friday, October 31, 2003 3:01 PM CST **UPDATE 4:30PM** OK, add another 1.1 million for a total of 3.2 million (they would be happy with 4 million but if she continues to produce the will keep going until 5 mill. Hope you all have a great time tonight! WE are going back in for more blood tonight! Trick or treat!
Happy Halloween! (1:00 PM) I wish I could say we are coming home today. Jodie is hooked up to the vampire machine, and they continue to take blood out of her neck like a starved vampire! I am not sure when we will be coming home. They really want to get 5 million total cells, and as of last night we had 2 million. If today goes well, we will get another million, then tomorrow, then Sunday etc. It seems like everytime we change our flight and tell our family we are coming home, they come in and say "We need you to stay for _____. Yesterday we had a really long day, checked into the Clinic at 7:00Am to have the meherker put in her neck, then the stem cell collection, then to the Univ of Washington for the Radiation consult, then 2 units of blood and one of platletts until 11:30 PM. We will probably do the same thing all over again today. I will post her collection counts later today when we find out.
More later...
Thursday, October 30, 2003 12:12 AM CST **Update 6:00PM** Jodie collected 1.3 million CD34 cells today. What does that mean? Well last time with two collection efforts we got 800,000. So to get 1.2 with one attempt is a huge improvement. So, we have to do another one tomorrow, then possibly a third. When we combine all the collections, we need to get near 3-5million cells. So we are well on our way. We have had a long day, We are back in the Univ Washington Hospital tonight giving Jodie more Red Blood and Platlets. I have said this before but this is a huge help to Jodie and others. It changes their quality of life almost instantly. Thanks for all who donate!
We also met with the Radiation Doc today. He said he feels confident he could do Jodie's treatment here as opposed to San Francisco, but we have not decided yet.
C-ya all later!
(10:00AM)OK, We are at the big day now! Jodie had her Meherkur put in her sub clavian artery (neck). Here is an amazing twist of fate/blessing! The central line Jodie had put in to do the chemo back in August is called a HICKMAN. Today when Jodie had her Meherkur line put (an outpatient procedure) in for the stem cell collection who put it in? Dr HICKMAN! The very same who designed Jodie's central line mentioned above. Why is this such a big deal? Because Jodie had been worried and wanted someone who knew what they were doing to put in the Meherker. Oh and by the way, Dr. Hickman and us share a common friend. Gordon B. Hinkley. It appears that Dr. Hickman was a Mission President in Hattai.
Needless to say, Jodie was much more at ease, and he let me watch the procedure. It was amazing! The line is actually instered into the vein, all the way down to her heart. You can see the whole thing happening live on the X-ray! It was cool!
Anyway, I will update more later when we know how successful it was. (sorry for spelling).
Matt.
Wednesday, October 29, 2003 2:21 PM CST WOW! I don't know what happened (prayer/faith/medicine/Mexican Food or all of the above) but JODIE's COUNT WENT TO 5.6 and we need 10.0+ so they are going to start on Thursday. They expect it to double again, which should give us a good collection.
They are going to install a Meherker catheder in her neck/shoulder area to increase the flow of blood to process a higher volume of blood. This should allow a greater harvest of total cells.
Jodie is doing pretty good, still feeling about 70%. We did laundry this morning at coin up laundrymat, so we have clean clothes and will continue to stay at the Sheraton hotel compliments of the American Cancer Society and the Sheraton Hotel. (They do that for cancer patients when they have extra rooms). It is Jodie's first time at a really nice hotel!
Anyway, thanks for all your support and positive attitudes. We will update more tomorrow!
Tuesday, October 28, 2003 6:36 PM CST WE NEED MORE CD34 CELLS! They are up but not enough. They are at 1.7 up from 0.03 but need to be at 10.0+. So, until that happens we are stuck down here (proabably until at least Saturday). We miss the kids, we worry about Charlie and Jean and the kids because of the stress of it all. We will miss our kids at halloween. We are a little sad if you can not tell. We moved to a different hotel, Jodie is feeling much better. She still has pain but seems to have more energy, probably about 60-70%.
No more missing wig stories to tell, we just miss everyone and are hoping for more positive days ahead! Thanks everyone, Love Matt & Jodie.
Monday, October 27, 2003 1:33 PM CST **UPDATE:1:30PM** I mentioned below that I would update on the CD34stemcell count. It is not good. The count is 0.03 and it needs to be 5.0 or better. They would rather it be 10.0. SO we have a long way to go. They are increasing the nupagen so we will see. Jodie is really tired and sore today, I am taking her back to the hotel for a nap. It has been great being so close. Thanks to all who helped us stay at the hotel!
Greetings from Seattle (it is another beautiful sunny day, I wonder why they say it rains down here? In fact, I drove to church with the top down on the convertable our freinds the Brown's & Banker's loaned us). Anyway, I will post the results of the CD34 stem cell test later when we find out the results. Jodie is really sore, and they are talking about upping the dose if the count is not high enough. I don't know how she will manage that but we will do whatever we (she) have to I guess. Jodie also needed more plattlets today. That chemo is strong stuff because it is still killing stuff.
Jodie and I had a funny moment this morning as we were in a rush to leave the hotel this morning. We walked up to the car in a hurry and Jodie noticed a cool breeze. "OH MY GOSH! I AM STILL BALD!" (She ran back in to put her wig on but we think she wouldn't had noticed if not for the cold morning! Anyway, you sort of had to be there! Will post more later! BE SURE TO CHECK OUT JODIE's ENTRY FROM YESTERDAY IF YOU MISSED IT!
Saturday, October 25, 2003 3:43 PM CDT SUNDAY UPDATE**2:45PM. Great news, Jodie's white cell count has tripled in the last 24 hours so that means they can start to test for the CD34 stem cells. The high dose nupagen shots she has been getting are working. (It is a higher dose than last time, and it causes her a lot more bone pain but it is worth it!) We will add more later!
Here is Jodie's post from yesterday!
Hello Everyone!
I am once again feeling a lot like my normal self! I am really starting to like those blood products. I got one unit of plateletes and two units of red blood cells yesterday and that always perks me up!:)
Yesterday was a full day of tests and doctor visits. We started out at 9:00 a.m. and got back to our room at 11:30 p.m. The transplant team is taking care of me while I am here and I am extremely impressed with them! They kept us moving yesterday. Blood tests, Chest X-ray, platelet transfusion, bone marrow biopsy, and a red blood cell transfusion. They took great care of me and I am glad such good people will be taking care of me during my Bone Marrow Transplant. I learned yesterday that they do more BMTs here than anywhere in the WORLD. What a blessing! At least we know they know what they are doing! The guy that did my bone marrow biopsy had done 200 in the passed six weeks. He did a good job, but I was not all the way out! Can you believe it? After all I did to get here to have anethstetic?! They do something called conscious sedation. It worked really well so that I didn't care what was happening to me and I don't remember today what happened, but I remember that there were still times I felt pain. It was definitely better than my first bone marrow biopsy and I will do it here next time if possible, but it was not what I "signed up" for. One thing I have been blessed with in this trial is that I don't get anxious about these procedures and bad yucky tests. So yesterday when I found out about the sedation, it was okay. I felt at peace about it and now that it is OVER I feel even better about it!:)
We are at the doctor's office right now waiting to see the doctor and hear the results of my blood work from today. We know it will be better than yesterday mornings, because you almost cannot get worse than yesterdays! Hopeful all that extra Nupagen is doing its job and has brought up the white blood cell count!
We are hoping to be able to attend church in Marysville tomorrow, we just need to find out what time the Ward meets. It has been so fun to have an excuse to visit our old friends and neighbors. Hopefully we will see some of you tomorrow!!
Thanks for all your great notes! Once again as I caught up on the guestbook, I had tears and laughs. I love all of you and am grateful to be blessed with such great friends and family!
Jodie:)
Friday, October 24, 2003 11:20 AM CDT Well we are here in Seattle and it is a beautiful morning. Jodie is meeting with the transplant doctor this morning and they will do some prelimnary labs,history, explaining the procedure they will do in January etc. Later today she has her bone marrow biopsy. Jodie describes this as her one victory over the system that she was able to dictate where, when and how she got to have this biopsy. For those of you who don't know how this is done, (it's a bit graphic) they take what looks like a cork screw with a "T" handle on top and drill it down about 2" into Jodie's hip bone, and remove marrow. They do this about 4-6 times.
Our room is great, we are doing well, and will update more later.
UPDATE**3:00PM** Jodie has had a busy day, she is getting more blood products today to boost her energy. She was pretty low after the trip here. We used a wheelchair to and from the plane which helped a great deal. When the doctors saw her today they said she looked a little to pale so they decided to give her some blood products. Her biopsy went great, she was really brave! I am going to take home for some rest. They are going to tripple her dose of Nupagen to get those stem cells up early this time! I will add more tomorrow. Thanks for all your thoughts and prayers.
Wednesday, October 22, 2003 2:44 AM CDT Hi Everyone!
It's almost midnight and I couldn't sleep (which I deal with sometimes because of steroids I take on occasion) so I thought it would be better to pass the time doing something constructive instead of laying with my eyes closed pretending that I am asleep!:)
I got my plateletes today and I feel like somewhat of my old self again--at least I can hold my head up and carry on a conversation. I even sweeped the kitchen floor tonight after dinner (Woo, Woo!!) It makes me marvel everytime I get a transfusion at the rapidness of the effect of the treatment. Just to show you, each time I get a tranfusion I get hungry in the middle of it, and by the end, I am usually thinking I am ready for the Boston Marathon--well, maybe not Boston. Today was no different--Doritos in the middle, a marathon by the end.
While I have you all here :), I wanted to ask your forgiveness for any unreturned phone calls, unanswered e-mails, or unwritten thank you notes. Please know that my heart is with each and every one of you--NO EXCEPTION--my body is just not able to accomplish all that I need to right now and Matt is doing enough for the two of us plus carving pumpkins with the kids.:) I feel so bad that I can't talk with each of you (although I know you understand the situation) and tell you individually how much I appreciate each note or special thing you do for our family. You have gotten me through so many hard days and I am so amazed at the love and prayers that I feel each day from each one of you. Thank you from the bottom of my heart!!! Keep those prayers and guestbook entries coming. Some days thats all that can get me to smile!
Well, we are off to Seattle on Thursday for the big bone marrow biopsy and second try at apheresis! Pray for painless and successful--well, okay, successful is more important. We will post as often as we can while we are there, that's assuming we don't get washed away by the flooding. If you don't hear from us, send a boat and two life jackets!
Love you all!!
Jodie:)
Tuesday, October 21, 2003 10:50 AM CDT Hello everyone! Thanks for checking in today. Jodie continues to move from one phase to another. She did not sleep last night because of the bone pain caused by the low blood cell counts and the nupagen. But that can be controlled with pain medicine so she will continue to improve for the next few days. Today she has to have a blood platelet transfer. Her counts are getting really low from the chemo doing it’s job. There have been a few who have expressed that they wanted to give blood or already do on a regular basis. This is a topic I have never addressed before. To those of you who already donate blood products I am sure you are already aware of the help that you are to people. Let me tell you how it has helped us.
At first we were reluctant to accept blood products for fear of transmission of diseases. But the first time Jodie received them her condition improved miraculously. It brings about almost and instant change in her color and energy level. When someone like Jodie is in desperate need of red blood cells, platelets, or units of whole blood it makes me so thankful that people donate. Sometimes you wonder who the source is and if they have taken care of their bodies, but the blood goes through an extensive screening process. They have said that it is possible to donate directly to a person but it is not possible to store the blood for very long. Since we never know when Jodie will need it next, we have decided to continue to rely on the blood from the general bank. That is why we want to continue to encourage people to donate to the general bank. In a way, it is helping Jodie and people like her in a very direct way! So thanks to all who can donate.
That is all for today. We send our love to all from Alaska where it is beginning to get colder and darker as winter is soon to begin. I am switching the tires on the van & suburban to our studded snow tires in anticipation of our first snowfall.
Love the Clarks!
Monday, October 20, 2003 11:30 AM CDT I am happy to report that Jodie felt a little better yesterday and although she is still asleep, I think that she will feel a little better today. She seems to be moving more from the nausea stage to the sore bones, lack of energy stage as her blood cell counts had started to fall on Friday. I think she would agree that the nausea stage is worse.
Anyway, we had a nice day to recover from the week yesterday. It was nice to spend the weekend with the kids. We miss them while they are at school during the week.
Charlie and Jean had a nice stay at a cabin some friends of ours loaned them. Their batteries are recharged.
The end of our weekend was topped off by the delivery of a gift from some friends of mine from the U.S. Court System. Many of them I have not seen or worked with in some time. My new job has its own General Counsel office that deals with the violations. I have sent Rochelle with a thank you letter to all who gave, and I just wanted to say how much it uplifted our spirits. Thank you to all.
Until tomorrow!
Matt.
Friday, October 17, 2003 2:34 PM CDT **UPDATE FOR SATURDAY & SUNDAY** (Pretty much the same as Friday, not much change in Jodie's condition or spirits. Hoping we will see some improvement soon). Just a quiet weekend for us!
Posted Friday: I feel like I have given bad news for several days in a row but Jodie is still not doing well. She just can not seem to shake the nausea/lack of energy. This one seems to be much worse than the other ones. It has just absolutely wiped her out. She is about 30-40 nd just barely has enough energy to get up to eat. She spends most of her time in bed, and is able to keep her food down. We have an appointment with her doctor so we will see what she says.
Katie gets to go to Chuck E. Cheese for a birthday party. She was very excited as she left this morning. Today she sat on my lap and we watched all of the fun pictures pop up on the computer screen. Ones of Grandma’s and Grandpa’s, cousins, friends, fishing, and lots of fun things! (Windows XP has a screensaver that scrolls through your digital photos like a slide show. We love it!)
The boys divide their time between library books, yugio cards, and Nintendo! Now that it is getting colder and darker they don’t play outside much. We have normal daylight compared to the rest of the country but will soon begin to have shorter and shorter days! It will be new for Charlie and Jean.
Well, that’s all for now. Stay tuned for tomorrow’s issue!
Love Matt.
Thursday, October 16, 2003 4:32 PM CDT Jodie is feeling a little better. Probably about 50%. She still has some nausea and spends quite a bit of time sleeping.
Yesterday was not a good day for her at all. I can tell when she gets really down emotionally and she was low. I think she wonders how she can continue to endure the side effects and her feelings of being unable to contribute to taking care of the house and kids. She knows she still has a long way to go, and the doctors have been pretty unanimous about the likely hood of it coming back and her having to go through it again in 3-4 years. All that stuff combined makes it tough for her to endure the pain right now. She knows it is what she must do, and who wouldn't feel that way if we were in her shoes. We know we must do all that it is medically possible and leave the rest to faith and prayer.
I expect by the end of the week she will begin to improve and will be feeling a little stronger both physically and emotionally. Thanks to all!
Love Matt.
Wednesday, October 15, 2003 10:21 AM CDT UPDATE FOR WEDNESDAY
Jodie came home from the hospital on Tuesday at 1:00PM. She was so glad to be back. This course of drugs sure was different. The nausea was a late onset as she got sick right before we left the hospital. That has never happened before. She is still pretty queasy and sleeps most of the time but she is so glad to be home. Last night Jean made clam chowder and we all really enjoyed that.
So for the next few days it is just “Wait and See” and allow Jodie time to recover. We plan to go to Seattle on the 23rd for the second stem cell harvest. Jodie may have to go back into the hospital if she gets a fever again.
We really hope all is going well in your lives as we do think and care about each of you and pray that your days are loaded with fun and exciting experiences.
Charlie and Jean are excited that they upgraded to a new KING SIZE BED! We made the late night trip to Sam's Club and got it set up just in time for bedtime!
I was so excited to get a call from my middle brother Jared, they had their first baby “Gracie Noel Clark” a beautiful girl. It was so neat to hear how they enjoyed the experience (if that is possible for the mother?). Anyway, we love you all!
Love Matt & Jodie.
Wednesday, October 15, 2003 10:21 AM CDT UPDATE FOR WEDNESDAY
Jodie came home from the hospital on Tuesday at 1:00PM. She was so glad to be back. This course of drugs sure was different. The nausea was a late onset as she got sick right before we left the hospital. That has never happened before. She is still pretty queasy and sleeps most of the time but she is so glad to be home. Last night Jean made clam chowder and we all really enjoyed that.
So for the next few days it is just “Wait and See” and allow Jodie time to recover. We plan to go to Seattle on the 23rd for the second stem cell harvest. Jodie may have to go back into the hospital if she gets a fever again.
We really hope all is going well in your lives as we do think and care about each of you and pray that your days are loaded with fun and exciting experiences.
I was so excited to get a call from my middle brother Jared, they had their first baby “Gracie Noel Clark” a beautiful girl. It was so neat to hear how they enjoyed the experience (if that is possible for the mother?). Anyway, we love you all!
Love Matt & Jodie.
Monday, October 13, 2003 11:58 PM CDT UPDATE FOR MONDAY/TUESDAY
Jodie is doing better than yesterday. She had her last dose of this cycle at 8:00PM on Sunday, and made it through the night and all day Monday without getting sick. She only felt like throwing up instead of doing it! So I would say that means she is feeling about %40. She should come home on Tuesday afternoon. I know she will be looking forward to that!
Jodie still has her eyebrows and lashes and she is happy about that. It is really hard to see her so run down but she smiles with her brown eyes and you can see it is Jodie!
The kids are doing well, Jean is running around the house, busy doing all kinds of things. Let me tell you how hard she works. (about to be a very long run on sentence)First she wakes the boys up for School at 7:15, fixes them breakfast/ and prepares their lunch for school. (I usually get up for moral support but she does such a good job I just get ready for my day). She stays on top of the boys, helps them find their homework at the last minute, and sends them off for the bus. Then we get Emmy up, hoping to let Katie sleep (doesn't happen very often). Then we get Emmy of to school, and then Grandma has to fix Katie and Grandpa Charlie eggs. (I am afraid Grandma has spoiled Katie with eggs, she almost demands it every morning)! Then we get Katie off to someplace to play for the day and then the real work begins. Laundry for 8 people (and Emmy and Katie often ruin more than one outfit). Sweeping the floor beneath the table is not a pretty sight. Then she cleans the kitchen, picks up Katie, makes her lunch, puts her down for a nap, then Emmy gets home, then the boys get home, then I get home, then she makes dinner, then we help her clean the kitchen but we never do as good a job as she could do, then she makes us strawberry shakes or something fun, then it is the long bedtime routine, pajamas, stories, drinks, singing a song, and then finally she gets to sit down with Charlie for a little T.V. and time together.
Can you believe what a great person she is! When you consider that she did this for five of her own kids, and thought she was done with that stuff 10 years ago, it makes me very grateful to have her right now!
Goodnight!
Sunday, October 12, 2003 7:41 PM CDT Well, the nausea bug finally hit Jodie. She is feeling about 20% right now. Very sick, lots of vomiting and nausea. I went and sat with her today for about 3 hours and she slept the whole time. (She got sick about 5 times).
So, she probably should not have any visitors at the hospital until she gets feeling better. I know there are so many of you out there silently supporting her! SHE IS AWARE YOU ARE OUT THERE SO KEEP IT UP!
She has her last dose tonight at 8:00PM. My guess is that she will not come home tomorrow. They usually will not let her go home until she can keep food down and is re-hydrated from the day before. Hopefully Tuesday. I will check to see how she is doing and will post a new one tomorrow.
Love Matt.
Saturday, October 11, 2003 0:33 AM CDT **I have been told that the site may be view only for a few days due to a server upgrade**
UPDATE FOR FRIDAY/SATURDAY
I have a lot to say tonight. First of all, Jodie is doing really well. It has surprised us both. She is at about 60 he has had two doses of chemotherapy so far this cycle. If you remember I told you that this one is different from the previous two. It is supposed to be really bad and ugly. It is Cysplatin (platinum) and Etopiside. If any of you have read Lance Armstrong's book about fighting cancer these are the same drugs he took to fight testicular/brain/lung cancer. He does a great job of describing the awful bouts of nausea and vomiting. For some reason, Jodie is doing really well this time. Her nausea is being controlled and she has so for had a decent amount of appetite and energy.
We consider many things to be blessings rather than coincidence. This is just one of the many. That Jodie is able to slowly but steadily endure each of the many things that are given to her body to make her better.
The second is that someone left Jodie and I wonderful gift at Obe & Kim's house. We love it and are deeply touched that someone or people would do this for us. I am in a bit of hot water though. It seems that I lost the card in transit between Kim's house and Jodie. I looked everywhere and it must have fallen off the package. (We know the gift was meant to be anonyms but we are both really sad we missed the card). If there is anyway someone could reproduce the thoughts contained in the card we would love a second chance! Anyway, even if that does not happen, please know that we will get very good use out of the gift and think it is wonderful. It will make the long trips shorter and the boring days in the hospital and waiting for tests much more enjoyable. Thank you again.
We have so many friends and family that have taken time, and made sacrifices to make care packages, send cards, flowers, meals, sent books, air miles, watched our kids, helped Gene and Charlie, and so many more things I could just go on and on. Just the fact that so many people tune in amazes us. Jodie (when she feels up to it) and I read the guest book religiously every day and have smiles from ear to ear, and occasionally tears of thankfulness for you. I truly mean that! If you have not taken the opportunity, read through some of the uplifting things people have said. You will be amazed how many, and how far the branches extend.
Tonight, I had a very emotional experience. One of the other things I have considered a blessing is how our kids are dealing with all this. You would think that they would cry and howl that they want their mom and cry themselves to sleep. But there is a peace about them in knowing their mom is ok, and at the hospital, just as if she was in the next room. And so they don't cry or worry about her. It is ok to them. They really have no idea how serious this is. We have not tried to hide it from them, and they overhear lots of things.
Tonight I let the girls call Jodie and tell her goodnight. From the other room I heard them each join in a verse of "You are my sunshine" as Jodie sang to them on the phone. (She sings that to them every night when she is home). When Katie was singing it she said, "You’ll never know dear, how much I love you, please don’t take my mom away." I knew right then, that something made Katie at peace, and they told mom goodnight, and they fell quietly asleep. We have to help Jodie get through this so that she can sing to her girls. No one can take her place.
I want to thank all of you again for how much you mean to us. We love you all so much! Goodnight.
Wednesday, October 8, 2003 11:28 PM CDT Wednesday/Thursday update
Jodie's headed back in to the hospital early tomorrow for her third round of chemo. She will be using a new cocktail of drugs on this round and round 5. She was actually really pleased that it got delayed for a few days so she could catch up with the kids. (I think she has had her fill of me though). She also was able to go to Mexican lunch with about 12 of her girlfriends. She had a great time. She also had a hearing test today so I know she can hear me when I whisper sweet nothings!
Anyway, she should be in for about 4-5 days like last time, and I will keep everyone informed.
I will add more when there is more!
( I ADDED PHOTOS A COUPLE OF DAYS AGO IF YOU HAVENT CHECKED IN A WHILE).
Matt
Tuesday, October 7, 2003 1:44 AM CDT NEW PHOTOS! Jodie enjoyed a nice day at home. She is feeling pretty good, about 80till. She goes in for a bunch of tests (MRI, CT's, PET Scans etc) to see how the chemo is working. It will be a few days before we hear. We are not sure if she will start chemo tomorrow or not because her blood platlets are too low. So we are waiting to find out.
Enjoy the photos. Will ad more later!
Sunday, October 5, 2003 10:28 AM CDT Sunday, 8:30AM, we are back in the vampire's office getting those precious CD34 cells sucked out of Jodie's veins. As I said yesterday we were disapointed that we could not go home yesterday but we have accepted that we need this done, and we don't want to have to come back in three weeks (which we were told was a possibility) if they can not collect enough today.
We have been helped by so many people to be here that we just can not get over how blessed we are. People have helped with the cost of her medicine, our travel down here, giving us a vehicle to drive and a place to stay and most important, taking care of our kids. Where would we be without you? To say thank you is not enough! But we will try! If all goes well we will be home in Anchorage tonight at 10:00pm, we have Monday off, and then Jodie goes back in the hospital for chemo on Tuesday.
I will post the results of today's collection later.
***WE ARE HOME!*** Katie was there to greet us as she jumped up and down ant the top of the stairs!
As for the results of today, not so good! But, like Jodie says, if there is an exception to the rule, Jodie is it. If someone says there is a small percentage of people that have side effects or difficulties, she is it! She has to go back in three weeks to have this done agian because they only collected 1/2 of what they need for a transplant. So we will be going back after her next chemo cycle.
More later.
Matt.
Saturday, October 4, 2003 1:09 PM CDT 11:00AM Seattle Time. We are in the middle of the collection process. The nurse told us today that most people do not finish in one day, and that we may need to come back tomorrow. We were sad to hear that but we are still hoping. After they collect cells for 4 hours they send her sample to the lab to be tested and that is when we learn how succesful they were. If they get 5million cells for every kilogram she weighs they are satisfied. If not, we come back tomorrow. We will know more this afternoon.
Jodie is doing fine, just lying there watching TV as her blood runs into a cool looking machine and then right back into her. (Isn't it nice that they warm it up for her before giving it back!)
I will ad more to this message as the day goes on.
4:30PM Seattle Time: We just found out that we have to stay and do some more collection tomorrow. We did not get as much as the doctor wanted. As you can imagine, Jodie and are very sad because we were so excited to fly home and spend time with the kids. This is Jodie's "Good Week" and she wishes that she could have been with the kids. I just have to keep reminding her that this is an investment so that she can spend more time with the kids in the future!
More later.
Matt & Jodie
Friday, October 3, 2003 8:08 PM CDT Jodie is feeling about 80% today and her CD34 count is 5.7 today, so they are going to start the transfer tomorrow at 8:00AM.They figure it should be at a 8.0 by the time they start which they say is close enough. I think they just want to get rid of us don't you?
Jodie is not excited about getting up that early. We will have to change our flight tomorrow but maybe we will be out of here late Saturday night. We had a good day today, hoping all goes well tomorrow.
I'll bet this site gets more hits than Yahoo or MSN what do you think! Thanks everybody.
Love Matt & Jodie.
Thursday, October 2, 2003 10:10 AM CDT Greetings from Seattle. We are enjoying some warmer weather and have reflected time and time again how much we miss the people but not the traffic! Jodie has been feeling about 70% the last few days, and we have been moving all over the city. We get up and travel about 30 miles to North Seattle for Jodie's labs, then we go and kill some time and find a nice place to have lunch. Yesterday we tried the Rainforest Cafe (they have about 20 restaurants worldwide). It was a fun atmosphere (they had cool fish tanks and waterfalls).
We have had some set backs so far. Jodie's CD34 (stem cell) count was at 1.5 yesterday and .8 the day before. They told us that we needed it to be 10.0 before they could harvest. So we have now doubled the dose and she is getting the equivalent of 4 doses a day now. That is a lot but we want to get it rolling so we can go home. Jodie is due to start Chemo back in Anchorage on Tuesday. So everybody pray that this medicine will do its thing.
We were able to visit another family that we missed (the Smith's) last night. They moved from Anchorage to here a few months ago. They have 5 rowdy boys that are full of energy and life! It was great to see them.
Well time to head off to do labs again to see what the numbers are today. Thanks for all of the fun notes we are getting and for all those who check in!
More soon, Love Matt.
Tuesday, September 30, 2003 6:03 PM CDT We had a fantastic day on Monday. We arrived in Seattle on Sunday night and got some rest at our friends home in Auburn,WA (the Brown's) We knew them from when we lived in Bothell, WA.
On Monday we met with Dr. Park and had a few tests to see when we would be ready to harvest Jodie's stem cells (CD34 cells).
Monday evening we drove up to Marysville and visited some of our old neighboors Jim & Rene & Laurie (They are the best!) It was fun to see our old house and street. We stayed with the Keeney's. They were very close friends of ours (Larry used to be our church Bishop). They have recently moved into their dreamhome that they designed and it was beautiful.
ONE OF THE NEATEST THINGS WE HAVE DONE SINCE CANCER IS CATCHING UP WITH OLD FRIENDS. The Keeney's invited about 20 people into their home that we knew from Marysville and we had some chicken and caught up on our lives in the last three years. Some knew all about Jodie, others were new to the whole thing. The men and women segregated themselves and the guys talked about everything from hunting/fishing to life changing experiences like this one. (I think the women talked about the Dr. Phil show or something). Well, I am sure they talked about something emotional because I saw a lot of smiles and tears. OUR ONLY REGRET WAS THAT WE BROUGHT A CAMERA BUT FORGOT TO USE IT! We visited until about 10:30pm, and then went to bed.
TUESDAY we got up and went to the hospital to have more labs done and found out that we may have to wait until Wednesday or Thursday to start the process. (Jodie's CD34 cell count was lower than they wanted to see). That is why she takes the daily injection of NUPAGEN. Now we are up to 2 times daily to get that CD34 count up. Jodie was also sad to learn she has to use a big needle in her arm to get the blood into the machine (she gets to use her catheter to return it though). She is not big on needles! Anyway, we came home and she crashed into bed for a long nap, (I think it was a long day yesterday for her).
Anyway, we are still able to check in with this site, and we read some fun messages from you today at the hospital. Thanks everyone, we are doing fine. Keep up the faith, thoughts and prayers. I will update tomorrow!
Matt.
Saturday, September 27, 2003 6:37 PM CDT FROM JODIE:
I decided to stop flipping through the television channels on the hospital tv and type a message for the website. TV viewing on a Saturday morning in the hospital does not leave many choices. Right now I am getting a platelet transfusion. It looks REALLY gross. Its this yellow (forgive me) snotty-looking substance running into me. It kind of makes me sick! I also received more antiibiotics today because my fever went up (101.0) again last night,. I received 3 units of red blood cells yesterday and am going to receive 2 more today. My hematicrit needs to be 35 for my stem cell harvest next week and it was only about 32 after the three units yesterday. That is the reason for two more today. I also start getting two Nuepegen shots starting today for the next five days. I can't tell you how excited I am to be able to get TWO shots a day instead of the normal one. When I think that things aren't going my way (as I have felt a lot lately) and I can't catch a break (like getting two shots instead of one), I have just been saying, "well at least I have a nice round head. We should be thankful for the small blessings of everyday!" It makes the nurses laugh.
Actually, I know that I am very blessed. One of the biggest blessings and the one that I am thankful for everyday is having my Mom and Charlie with us. They are amazing. Not only do I appreciate all they do for our family, but I have really noticed these last few weeks how nice it is to have my mom around all the time to visit with. It really keeps my spirits up. I can't imagine going through this without her to keep me going. I can't even imagine what it would be like to have to send Katie off everyday and be stuck home by myself with nothing but the tv to keep me company. I am so grateful that her and Charlie put their lives on hold to come here and help my family. I am grateful to all those people they left behind, friends and family, for the sacrifices they had to make to send my Mom and Charlie here. I am so grateful to all those many people at Hill AFB who donated leave to my mom in order to make it possible for her to be here and for those special people that she works directly with who not only made it possible for her to come, but have been so loving and kind through this whole process. You have all blessed my life, Matt's life and my children's life. Lots of you don't even know us and you still made sacrifices. Thank you and I pray that God will bless you for your goodness.
All you people are amazing. I love to read the guestbook on the website and hear from so many old, new, and true blue friends! It brightens my days. I am not able to read them everyday, but I try to look every second or third day. I have tried multiple times to send replies back to you, but our computer is not configured correctly apparently. Maybe I will ask Lucy Lu aka Julie Broyles or her husband if they know what I am doing wrong!:)
I enjoyed the comments about my glamour nails!:) Matt's Aunt Sali sent me for a manicure (Thanks, Aunt Sali!) before my second round of chemo and I don't know if the chemo makes my nails stronger or if it is lack of housework, but they have actually been growing for the first time in my life!! I got a French manicure when I went and it didn't even last 24 hours before it was coming off, so I painted them myself before I went in for my second round of chemo. Right now they are painted a nice shade of sheer natural beige which my husband actually bought to make special lures for rainbow fishing. I really like the color, so thanks to Brent Western for steering my husband to sheer natural beige! I am enjoying my manicured nails so maybe that is another small blessing I can be thankful for--nails that are actually growing AND a nice round head!!
Love, Jodie!
(MATT) We are flying to Seattle tomorrow (thanks to more freinds who helped us with Alaska Air miles) to harvest Jodie's stem cells. It is only a one day procedure (kind of like dialisis) but we have to wait until the blood count is just right (so we will be there almost a week). I will try and keep you all informed, but this will be our last update for a few days. We love you all. Thank you.
Matt.
Friday, September 26, 2003 10:21 PM CDT Hi everyone, the latest is that Jodie is still in the hospital and will probably not come home until Saturday or Sunday. She is feeling about 40%, and still had a fever of 101 this afternoon. She had 3 units of blood and took lots of naps today. That helps restore her energy and blood counts that she needs. Me and the kids brought dinner tonight with WENDY's. She didn't want her chicken nuggets or fries so Tanner ate them and a bowl of chili, not to mention his own nuggets and fries!! After we got home, Jodie called me and begged me to bring her Mongolian Beef and ham fried rice. So I am headed back in a little while with some Chinese food!
See you all on the World Wide Web tomorrow!
Love Matt.
Friday, September 26, 2003 4:33 AM CDT It is 1:30 AM on Friday morning and I just got back from taking Jodie to the Hospital. CAN YOU BELIVE THE TIMING? It was within 1/2 hour of when we had to go last time. 10:30 on Thursday night. Tonight Jodie had a fever of 101 and chills at (just like 3 weeks ago). Last time they let her go home but this time they said to just admit her because she needs some antibiotics by I/V and she was due to get a blood transfusion and a bunch of tests on Friday. The transfusion alone takes about 6-8 hours so this way she can just rest in bed and get all of her stuff done. She will probably be in for a couple of days.
It is probably best that she not have visitors because she is at her lowest blood cell counts. Normal people have a score of 6000 white blood cells. Jodie had a score of 200 this morning. She will probably go a little lower than that tomorrow.
But if she follows last the same schedule as last time, she will rebound pretty good after she gets some blood and will be doing better by Sunday.
Thanks for all your love and prayers everyone.
Love Matt.
Thursday, September 25, 2003 1:04 PM CDT Hi Everyone, I get inspired to write when I see how many people use this to keep up.
Jodie is hanging in there. She has been at about 50 he last few days having good hours and bad hours. Times where she seems to feel pretty good, and times where her energy level crashes a bit. She has been able to sit out in the family room with us and watch some T.V., including the THE BACHELOR! Yes, like many American's she is excited to see who will win Bob's heart. Charlie and I were forced to watch it by our wives! (I think we both are closet fans though).
Jodie is starting to flirt with a low grade fever so we are hoping we can avoid the hospital. Thanks for all your love notes everyone! Will update agian soon!
Love Matt.
Tuesday, September 23, 2003 6:56 PM CDT Wow, the support network continues to grow and grow. I have some good news for a change. Jodie had a pretty good day for a change. I took her to get her daily injection and she felt much better and actually kept her eyes open and spoke to me on the way and the way back. The last few times she had to just lean back and close her eyes and dared not speak for fear she would get sick. She had a good morning with the girls. Emmy stayed home from school sick with a cold (not good timing since Jodie's immune system is weak but what can you do!) and she was able to spend time with them as they came to cuddle in her bed this morning.
Sure fun to hear from people we have not seen or talked to in a while. Thanks for all the notes!
Love Matt.
Monday, September 22, 2003 11:08 AM CDT Jodie has had a difficult weekend since coming home from the hospital on Friday. She spent the better part of Sunday in bed with her eyes closed because that was the only position that kept her nausea under control. I know she really missed being able to go to church. What little energy she has she loves to spend with her kids when they come close and talk to her. It is really hard to see her so wiped out but this is how chemo works I guess. There have been many cute moments between the kids and Jodie during this time.
Jodie takes daily injections of Nupagen, which I think I have mentioned before. That stimulates her bone marrow to grow new blood cells, which causes her "bone pain." She describes it as flu like aches all over. She is able to manage that pain with medication most of the time. Sorry if all this seems negative, but I am just trying to give everyone the most realistic and up to date information. I will try and accentuate the positive as they develop! Thanks again to everyone for your love and support.
Matt.
Saturday, September 20, 2003 4:18 PM CDT Jodie is HOME FROM THE HOSPITAL, another one down! She came home on Friday at lunch time. By the end of all this everyone will know the routine (you could just look at the last cycle and see that it is the same)! She is tired and has little or no energy for the next week because the chemo has killed all her blood cells. Her white cell count and platelets will continue to decline until she hits bottom the middle of next week. Hopefully this time we can avoid going to the hospital at the end of the next week. But if we do, we know it is to be expected.
The most common thing Jodie says through some tears is "I just want to feel normal!" Then after she gets through that she is fine.
ME, well that is a long story but I am doing well. My mother in law Jean and her husband Charlie have saved my sanity. She has done such a fantastic job helping with the kids and the house/ meals, laundry etc. It would seem impossible without them. There are days where I wish that we had our old normal life back too. I see pictures or events before May of 2003 and think, "That was when things were normal." I get lonely sometimes when she is at the hospital and miss her energy when she is home because we can't do all the fun things that we want to do. But, life is full of struggles and trials, and this one will not be our last.
CHECK OUT SOME NEW PHOTOS! Jodie read a week worth of entries from the guest book after getting back from the hospital and had tears streaming down her face because of your kind words! Thank you to all who wrote and to all those who visited just to check in on us.
WE LOVE YOU ALL!
Matt.
Friday, September 19, 2003 0:44 AM CDT (From Jodie)
It is Thursday afternoon and here I am spending (hopefully) my last full day this week in the hospital. I am as usually feeling nauseated, especially because they keep making me fill out these stupid menus with all these different, sickening foods, and then I have to ask for more nausea medication, and then the food arrives and I have to ask for more medication. The medicine is a mix of Ativan, Benadryl, and Haldol, so it goes without saying that a major side effect is sleepiness. But I would rather deal with the sleepiness than the nausea! So I am very thankful for that yucky medicine!! ":) I had a few visitors today to brighten my last full day in the hospital (my last drips of chemo just entered my body for this the second course). I was appreciative that my visitors understood my tiredness and some times lack of concentration. Actually they probably didn't even notice because I walk around half my life that way anyway, Right? :)
For those of you sweet souls who would like to donate bone marrow. You can breathe a sigh of relief but still count yourself courageous and blessed. The kind of BMT (Bone Marrow Transplant) I am getting comes from my blood. Apparently everyone has stems cells in their bone marrow that recreate bone marrow, but when your marrow is killed and needs to replace itself those stem cells float in your blood. So I will be giving my own blood around the 28th of September in order to collect those stems cells. I will also be doubling up on some shots that help the bone marrow to reproduce those stem cells more and faster. The body is an amazing thing and every day we gain more knowledge about it that can benefit us in so many ways.
Take a peek at the scrapbook. Matt was going to put a picture of my bald head on there for all your morbid curiosity!!:)
Hopefully I will be home tomorrow and enjoying my family again.
I love you all and am so grateful for your prayers on my behalf and I know I receive strength and comfort from them each day!
We love to hear from you about how you are doing to, so keep up with the quest book.
Love Jodie
Thursday, September 18, 2003 1:41 AM CDT Wednesday night, 11:00PM, Jodie is doing a little better today, she did not throw up all day! (She still has some nausea and sleeps most of the time I am with her). She actually had no recollection of Tuesday, and was really surprised to learn it was Wednesday so that makes me feel good that she forgot how awful she felt. She finishes this cycle at 9:00PM on Thursday, and then they will keep her for a few days until she can eat and drink. Goodnight all.
Matt. (Thanks for all the cool guest book messages everybody).
Wednesday, September 17, 2003 1:04 AM CDT Today (it's really Tuesday night) Jodie had a really hard day. This is the day that all of the nausea, vomiting, and diarreah hit. She was up almost every hour with all of the above. She is on a continous drip of two chemo drugs that run 24/7, she also has one that they give her for six hours, and then wait and give her six more hours the next day.
During this time they give her lots of anti-nausea medicine and things to make her sleep. The sleep part is working just not the anti-nausia. Poor Jodie, when she got this sick last time she thought maybe she had the flu in conjuntion with the chemo and that is why she was so sick. We (nurses, doctors, and family) are all in agreement that it wasn't the flu, this is just how it is going to be.
When I was with her today from 4:00PM-9:00PM she slept the whole time and barely spoke to me so I know she was hatin' it. Just when I left they were getting ready to give her the second cycle of the six hour bad stuff. I really wanted to stay with her but there is nothing I can do. We all feel that way. She will probably feel this way until Thursday morning. She just needs to continue to sleep through this hard part and hang in there a few more days. I am really tired so I am going to bed now. Goodnight everyone, thanks to all who visit this site and for all your encouragement.
Matt.
Monday, September 15, 2003 5:03 PM CDT
BACK FOR ROUND 2, Jodie is back in the hospital for round 2. It was kind of funny/sad to see her unpack her suitcase at the hospital because she knew exactly where to put everything. We moved the furniture a certain way, put her pictures up on the table next to her, unpacked her pillow and special quilt made by some close friends, put her favorite pajamas in the drawer and she was ready for another dose of poison.
She was really feeling good yesterday and the day before (she even said like her old self) but people that we have talked to told us that was how it would be. Just when you are starting to feel good it is time to start again. She proudly wears her scarves (made by some young women) and the wide array of hats.
She was sad to leave the kids for the week but she feels like she knows what to expect this time. Thanks again everybody!
P.S. ANYONE WHO IS A NEWCOMER TO THE SITE I URGE YOU TO READ SOME OF THE FIRST FEW ENTERIES TO SEE WHAT HER DIAGNOSIS AND TREATMENTS ARE. It goes into great detail.
Jodie loves to read the guestbook so please continue to sign in now and again.
Saturday, September 13, 2003 6:06 PM CDT Here Matt and I sit on the plane flying back from Seattle and our first visit with Dr. Julie Park (I am finally making use of the Palm Pilot and portable keyboard Matt's Mom gave me second hand. Pretty cool, huh?:). I keep thinking it is going to get easier to leave my kids, but I miss them so much each time I go. I can't imagine how it is going to be to have to leave them for six weeks in January!! But I am not going to worry about that now. Right now I am just going to focus on getting through the second round of chemo that starts on Monday. We both really liked Dr. Park and are glad she will be heading up my care. We will be returning to Seattle on Sunday, Sept. 28th for the stem cell harvest. I have to arrive a few days early because they have to wait until my my stem cells are at their peak. So they will test me and she thinks it will be Tuesday or Wednesday when the actual harvest happpens. After that I will have a PET Scan done to see if the spots of metastisis in my two vertebrae are shrinking. Everybody say your prayers for good results on that test. I will also be having another bone marrow biopsy and MRI done in Anchorage sometime after this second course of chemotherapy, so we are, of course, hoping to see some shrinkage in the cancer. Anyway, we will be in Seattle for about a week at the end of September first of October. I am not looking forward to another week away from the kids, but it makes me appreciate the fact that I can at least have my chemotherapy treatments in Anchorage.
I am feeling really good the last two days-like Jodie again. And I am hoping that I get these few days at the end of every cycle so that I have something to look forward to. I lost my hair on Tuesday. My mom actually shaved it off. It was starting to fall out by the handfuls and I decided that it would be a lot easier and a lot less messy to just get rid of the whole mess. I was glad to have my Mom, Charlie, Kim, Jenna and Katie there to cheer me on and tell me what a great shape my head is. It was really hard to look in the mirror the first time--I kind of had to start from the side and move my face real slowly into the mirror--but after looking the first time, I was okay. I think I look a little like GI Jane. You think the Army wants me? I am going to have Matt put a picture of me with my bald head inthe photo album in the next few days--also one with my wig. I wouldn't want all you far away to not be able to enjoy the sight of this sexy, bald woman!!:)
I know that Matt has told you all many times how thankful we are for all that each of you do, but I wanted to take this opportunity once again to tell you thank you myself. There are very few days that I feel well enough to sit and type for very long and the concentration that it takes to write thank you notes is hard to come by. When I am feeling good, I want to spend that energy with my children, so please forgive my lack of formal thank you notes. But I want you each to know that I am thankful from the very bottom of my soul for each and every act of kindness given to me and my family. Because of the prayers and the notes and the small and large acts of service from you, our experience with cancer has been a time of love and faith and hope instead of fear and bitterness and tragedy. Thank you! Thank you! Thank you! You are all remarkable people and we feel blesssed to call you family and friends!
Jodie:)
Saturday, September 13, 2003 6:06 PM CDT Here Matt and I sit on the plane flying back from Seattle and our first visit with Dr. Julie Park (I am finally making use of the Palm Pilot and portable keyboard Matt's Mom gave me second hand. Pretty cool, huh?:). I keep thinking it is going to get easier to leave my kids, but I miss them so much each time I go. I can't imagine how it is going to be to have to leave them for six weeks in January!! But I am not going to worry about that now. Right now I am just going to focus on getting through the second round of chemo that starts on Monday. We both really liked Dr. Park and are glad she will be heading up my care. We will be returning to Seattle on Sunday, Sept. 28th for the stem cell harvest. I have to arrive a few days early because they have to wait until my my stem cells are at their peak. So they will test me and she thinks it will be Tuesday or Wednesday when the actual harvest happpens. After that I will have a PET Scan done to see if the spots of metastisis in my two vertebrae are shrinking. Everybody say your prayers for good results on that test. I will also be having another bone marrow biopsy and MRI done in Anchorage sometime after this second course of chemotherapy, so we are, of course, hoping to see some shrinkage in the cancer. Anyway, we will be in Seattle for about a week at the end of September first of October. I am not looking forward to another week away from the kids, but it makes me appreciate the fact that I can at least have my chemotherapy treatments in Anchorage.
I am feeling really good the last two days-like Jodie again. And I am hoping that I get these few days at the end of every cycle so that I have something to look forward to. I lost my hair on Tuesday. My mom actually shaved it off. It was starting to fall out by the handfuls and I decided that it would be a lot easier and a lot less messy to just get rid of the whole mess. I was glad to have my Mom, Charlie, Kim, Jenna and Katie there to cheer me on and tell me what a great shape my head is. It was really hard to look in the mirror the first time--I kind of had to start from the side and move my face real slowly into the mirror--but after looking the first time, I was okay. I think I look a little like GI Jane. You think the Army wants me? I am going to have Matt put a picture of me with my bald head inthe photo album in the next few days--also one with my wig. I wouldn't want all you far away to not be able to enjoy the sight of this sexy, bald woman!!:)
I know that Matt has told you all many times how thankful we are for all that each of you do, but I wanted to take this opportunity once again to tell you thank you myself. There are very few days that I feel well enough to sit and type for very long and the concentration that it takes to write thank you notes is hard to come by. When I am feeling good, I want to spend that energy with my children, so please forgive my lack of formal thank you notes. But I want you each to know that I am thankful from the very bottom of my soul for each and every act of kindness given to me and my family. Because of the prayers and the notes and the small and large acts of service from you, our experience with cancer has been a time of love and faith and hope instead of fear and bitterness and tragedy. Thank you! Thank you! Thank you! You are all remarkable people and we feel blesssed to call you family and friends!
Jodie:)
Monday, September 8, 2003 4:58 PM CDT Just time for a quick message. Jodie had started to put one of her own up but she got tired and had to quit. Unfortunately it did not save anything she had started. Anyway, she came home from the hospital on Sunday afternoon (much to the joy of her family) and is actually feeling pretty good. She had a blood transfusion of 2 units and that really lifted her blood counts and energy level. It is amazing what they can do.
She is actually very excited to tell everyone that her blood counts are coming up, but her hair IS COMING OUT! It wont be long before the wig and hats are standard equipment. Just think of the money we will save on hairspray, volumizing spray, and haircuts! (We all know I am kidding right)!
Each time she runs her fingers through her hair she comes up with about 10-20 hairs, so she is deciding how long to wait to just shave it all off.
We are going to Seattle at the end of the week to meet with Dr. Parks about how the bone marrow transplant will go. Will add more in a few days. I can not sign off without thanking everyone once agian. Until next time!
P.S. Thanks to all who have signed the guest book, we really enjoy reading the little notes of encouragement!
Saturday, September 6, 2003 2:05 AM CDT Hi Everyone sorry to make you have to remember or bookmark a new webpage but I think you will find this one allows us to do some of the things we were hoping to on the other one.
As of Friday 09/05/03, Jodie went back into the hospital due to a high fever and low blood cell count. This is pretty normal and to be expected. The Chemo she is on is very strong and destructive to her bone marrow where white blood cells (immune system) are made. The idea is to kill cancer cells in the bone marrow, but in order to do that you have to kill all the cells, including the good kind. The premise is that good cells rebuild in about 2-3 weeks, and the bad cancer cells take more like 4 weeks to regrow. So... the result is that Jodie can catch a virus really easy.
She should be able to come home on Monday or Tuesday. She is in good spirits but misses her kids.
She really wanted to post something but was not able too. There have been many people who have sacrificed a great deal (time, air miles, and many have made financial donations). Because of what you have done, we have been able to travel to the best doctors in the country, and have learned the best strategy to fight this. We have been able to pay for all of our travel and are pretty caught up on medical bills thanks to all of you. We treat your funds as very sacred and appreciate more than you know the thoughts and prayers that go behind them. We hope that you are blessed many fold for your kindness. We have a lot of things ahead of us, and we sometimes wonder how we will make it through. We have so many hospitalizations, tests, and doctor bills to look forward to. One thing we did not count on was the perscription medicines she would be perscribed.A single dose of one drug alone called Neulestra (a bone marrow stimulant) cost $4000.00 (our insurance paid all but $670.00)and we have many more courses of that drug ahead. So we really wanted you to know how much we appreciate all you have done!
I will try and keep this up every few days! THANKS EVERYBODY! Love Matt and the kids. (No spell check, sorry!)
Monday, September 1, 2003 Hi everyone, Things are going pretty well this week. I just wanted everyone to know that Jodie's Mom and Charlie are here to help us now so things will be a lot better now. Jodie is very tired and weak most of the time and takes frequent naps, and is able to keep her food down. Her white blood cell count is really low wich means she needs to avoid contact with groups of people (she can catch a cold or something really easy because she has no immune system). She tries to do things around the house but tires quickly. Still has all her hair, and is in pretty good spirits. She agian wants me to tell everyone how greatfull she is for all the kind things people have done for her. We love you all. I will update more later.
Talk at you all later!
Love Matt, Jodie, and family.
Saturday, August 30, 2003 Wow, just another example of what great friends we have. Jodie is home now and is doing pretty good. She gets tired very quickly but is able to be up and around (better than after her surgery). She is still getting used to the idea of letting me give her shots (only one a month).
Matt Clark
Thursday, August 28, 2003 submitted by Julie (friend & neighbor of the Clark's)
Matt has asked me to update everyone on how Jodie's doing. He's busy holding down the fort while Jodie is recovering from her first round of chemo.
Jodie just completed 4 days of chemo at Providence Hospital. She was given a chemo cocktail of cytoxan, vincristine, and adriamycin. (Funny how deceptively innocuous these drugs sound, isn't it?) It was pretty rough on her, but she's feeling better and happy to still have her hair. She will be coming home some time tomorrow to rest up before her next cycle.
Jodie's mom and step-father are driving up from Utah. They will be moving in with Matt & Jodie and helping with the kids. Matt has been working hard preparing the house for their arrival. He even has a couple of surprises waiting at home for Jodie. What surprises, you say? Well, you'll just have to tune in later to find out!
Although Matt & Jodie are really busy and overwhelmed, I know they would love to hear from you. If you'd like to send them an email, their email address is: clarkfamily@lycos.com
Check here for updates. I'm planning on upgrading this site to include photos and other features.
By the way, if you're interested in learning more about neuroblastoma, cancer in general, treatment, etc. the American Cancer Society has a wonderful website for patients, family, and friends. Check it out at www.cancer.org
August 13, 2003 Hello Everyone, we are back from our travels and wanted to give everyone an update on how things are going. Before I do, let me apologize for having to do so much of this like a form letter. We have received so many cards, emails, phone calls, and prayers that we have felt the Titanic rising up from the deep.
I wish Jodie and I could sit down and write a note to each of you telling you how grateful and timely your support has felt to us. I am trying to keep my head above water at work, (they have been fantastic incidentally) and keep our house going. My mother and father saved our life by coming up to take care of the kids for 4 weeks on two separate occasions while Jodie and I met with doctors in New York, and San Francisco.
Most of you know that we searched the country and found two experts that offered different opinions on Jodie's condition. The one in San Francisco was emphatic in saying she needed chemotherapy and radiation immediately. The one in New York said that if things looked good on some tests, we might be able to just monitor the situation and treat with surgery if something comes up. So we were hoping our consultations would help us make some decisions.
This is what we found out. In New York we met with Dr. Chung at Sloan Kettering Hospital. He told us that he and his team deal only with Neuroblastoma. He said that there are only 600 cases a year nationwide of Neuroblastoma a year in the U.S. Of those, he and his team treat nearly 100 cases a year. Of those less than 8 are age 12-18, and in his entire 25 year career treating neuroblastoma, he has only treated 10 adults. He also said that he has never seen a case matching Jodie's age and tumor size without it being "metastatic" (spreading to other places). He said that if all the scans came back clean, he would recommend NO chemotherapy and radiation and just to keep a close eye on things.
She had six different types of scans (x-ray s, MRI, CT', bone marrow biopsies etc.). During this time we tried to go and do fun things like the Empire State Building, Statue of Liberty, the Today Show, Broadway Play etc. At the very end of the week, the doctor met with us and told us that out of the four bone marrow sites he had checked, he found what he thought were a small amount of cancer cells in her bone marrow. He said that he was 90% sure they were cancerous, but that only a certain type of test could tell for sure. He later told us that there was not enough sample left to do the additional tests.
He also told us that two of the scans, the PET Scan and the MRI showed what appeared to be more cancer cells in her T-10 vertebra (lower back bone) and that based on these new results he was changing her diagnosis from stage 1 neuroblastoma to the lower end of stage 4. This means that he advised us that strong chemotherapy, radiation, and an experimental antibody treatment were advised. He said these would be very difficult and painful for Jodie, and that she would probably be dealing with this type of cancer for the rest of her life but he was optimistic that if everything went well, it was possible to go 20+ years of clean results.
After being home only a few days, we went to San Francisco to meet with Dr. Matthay at UCSF. She had participated in a study of 16 adults treated since 1969-1995. I will only say that the results of this study impressed Jodie and I that we were really dealing with a very serious form of cancer. We forwarded the results of the tests in New York to her, and she came up with the following treatment plan. As of right now, this is probably what we are going to follow as we felt she was the most aggressive of the two doctors. When we asked her if we could wait until the middle or end of September she said she wished we could have started a month ago but she understood why we had to wait.
1) Six sessions of chemotherapy (4-5 days in the hospital for each session) 3-4 weeks apart. This will be done in Anchorage but supervised by Dr. Mattha from San Francisco.
2) After the six sessions a stem cell bone marrow transplant (with Jodie serving as her own donor). After two months of chemo, they harvest blood and isolate the stem cells that create new blood, and then save it for the end of the chemo therapy. She will be in the hospital for 4 weeks (most likely in Seattle) During this time, she will be undergoing an ultra high dose chemotherapy, and will be fed through an IV because she will have large sores in her mouth and intestines. After she is taken down to almost nothing, they will re-introduce her stem cells that were harvested from before.
3) She will then have 3 weeks of radiation treatment in the area of the original tumors, 5 days a week, hopefully done in Anchorage.
4) She will then be on a high dose of Acutane (acne drug) for six months, two weeks on, two weeks off.
5) During this time, she would continue to have the same scans and tests to monitor the progress of the treatment.
So all in all, we are looking at about a year of very aggressive treatment and a very hard road. But we know that if we have faith, and the support of our family and friends we can make it through all of this.
All of you have asked what you might do to help us. We may need air miles to travel, and the financial support you have given has offered so much help. But most importantly we need your love and prayers. Please pray that Jodie and I will be able to make it through all of this, and that she will be able to raise our children.
We will keep sending these out, and please again know that we love each of you and are so grateful for all of your love and support. We feel it every day.
Friday, September 5, 2003 2:01 PM CDT This page has just been created. Please check back for additional updates.
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