day 19

So yesterday I was thankful for Max.. it was spelt out in a lots of ways. LOL

Today I’m thankful for my faith. The last few days we have been thrown some curve balls that I’m not sure how we are going to handle, but as long as I keep faith that it will all work out and pray, I know I’ll be ok.  It was also good for the soul to go to church with the 3 years olds today. Just so wonderful to see God through their eyes.

Yesterday was Max’s birthday, We tired to give him the day he would love, a day that would make him happy. So I took off part of work so Josh and I could give him our undivded attention. Our first stop was to take Bella to school, then to the clinic. I’m not happy he had to go there as we avoided it for Josh and Bella’s birthday, but thankfully max was ok with it. He got to spin around on the chairs. Then we ran to Shopko to see Nana and get medicine for Josh. Next up was going to Fleet Farm. Max had gotten a gift card for there, so he had a fun time picking out his own gifts. Josh has never been to that one, so he enjoyed looking for hunting stuff. On the way back home we went to MidState John deere Dealership. Max loved all the toys and the tractors! Last stop was to the grocery store for Max to pick out his cake (a turkey) and cupcakes for school.

At home we ate lunch, then max took a nap. I went to work and Josh brought Max later in the afternoon to hang out with me at work while Josh and bella had some one on one time. We got home early, so we did supper, then present and cake. I think max had a great day. I know he enjoyed all his tractors and combine

I only want to say I pray for a cure so that Josh can spend more birthdays with his kids.

Day 17

Today I’m thankful for my sweet little girl. Bella made me a mommy and each day with her we blaze a trail of first, as each day is a new parenting day that we haven’t done before. She is so funny, smart and loving. We have thrown her for quite a few curves in the last four years and she has done so well with them. I’m so proud of all that hse has done in school and home. I’m so lucky that I’m able to be her mom!

 

Day 16

Today I’m thankful for those things you take for granted.. like washing machines, microwaves and running water. Today starts the deep clean to get our house ready for Max’s 4th (3rd if you ask him though) birthday party. I normally do my cleaning the first part of the week anyhow, but now areas that aren’t normally deep cleaned or passed over are cleaned the end of the week.  The heat that keeps our house warm enough for Josh and the A/c that kept it cool enough for him this summer. The microwave and oven to help us make food quickly or start it to we can walk away to do something else.  Unless one of big things is missing we forget how important it is in our lives.

http://shoeloverscare.com/ Go here to vote for The Lustgarten Foundation

you can vote every day for a change at 75,000 to go t Pancreatic cancer research.

Day 15

Thankful for the photographers we have met in our lives. Tanya from Precious Moments photography has been doing our kids pictures since Bella was 2.5 years old. She has been able to squeeze us in before each of Josh’s major surgeries. We love her and the wonderful memories she has captured for us. We have also had Becky of Studio Noveau come out to capture us on the farm. Pictures that I’m still printing out to hang up in our trailer as memories. 

yesdterday we drove down to Fennimore to get our family pictures taken at the christmas tree farm that we use to go to every year. It was so cool to be back there. Tanya did a great job with us and the kids were in such a great mood. Before hand we stopped at the popcorn store for a snack and then went to see the Great Grandparents. Grandpa is holding is own but you can tell he’s going downhill. The kids had fun dusting the house.

 

So all this talk of awerness made me thing of what I could do more. So I’ve decided I want to try to get a team together to do the Purple Stride 5k Run/Walk in Madison.  It’s may 7th 2016

http://purplestride.kintera.org/faf/home/default.asp?ievent=1148845

 

Who wants to Join me and raise money for Pancreatic cancer in honor of Josh’s fight??

Day 14

Today I’m thankful for a house. While our current house is not the idea house that I want to be living in, but it’s really helped to open our eyes to how little we need to live with and how to downsize. We still do have a lot in  a small space, but what we have we use. IT’s also brought us all closer together since there isn’t much space to spread out.  I’m also grateful that I can get it cleaned up in just a couple hours and that the kids are willing to help these days.

 

Josh has a strong faith, and mine has grown leaps and bounds since I met Josh. We have been trying to keep the faith that it will work out for what’s best. We don’t know what “best” is yet, but Josh keeps fighting on and I’m right behind him every step of the way. Our faith has wavered at times, but then there is always that sign that gives the courage to go on. While our faith that Josh can be cured is pretty low, we do have the faith that Josh will be able to make one more day. We take it one day at a time and set short term goals. In May when this all started we weren’t sure if he would make it through the summer, that was 6 months ago. So we have already been granted 6 months, We are going to fight through these holidays and try to make this the best holiday season just in case. We are excited to make the most of the holidays as all four of us will be off for two weeks with no plans to go anywhere, only to do what the kids really want to do and the guest that want to come visit! Let’s hope for Snow this Christmas season

Day 13

PToday I'm thankful for my friends. I've been lucky to have so many friends both close by and far away. There is a special group that I've been friends with since middle school. We have been through some rough times, fun times, crazy times and silly times. When I moved away I missed the like crazy, we only would see each other every couple of months and a phone call every now and then. It seems like we were connected then. I moved backed almost a year and half ago, and I realize that in the last half of a year I've been taking my friends for granted. Most live only 30 mins away yet I see them still only once every couple of months. I have let work stress, working mom guilt and cancer get in the way of being the friend I should be. When we do get together we have a good time and I have memories that I will cherish forever.Going forward I want to do more to show them what they mean to me. 

 

I also met some great people in support groups that we share a lot, one being all mama’s of little kids born around the time of max, the other have helped me through all this cancer stuff. it’s been great because I can voice my feelings and I don’t have to see their faces, which is the hardest part of me opening up. They also can relate in ways my other friends can’t. it’s nice to feel loved in so many different groups and ways.

 

Today the kids and I wore purple and we had a few friends join in with us too.

some of the kids and staff joined in too..only I don’t have their pictures.

We made max a purple tractor shirt bc I waited too long to find purple for a boy

 

Day 12

Today I’m thankful to be able to express my feelings and be alive. I’ve had a wide range of emotions in the last week. IT’s been crazy being away from my family, being with girlfriends, fun with the kids and the ups and downs of cancer.

Today Josh has chemo, but first we went to school mass while Max was in school. Then we stopped off for coffee before spending almost 4 hours at the clinic. I hate when they can’t get an iv started right away on Josh. Then he got fluids ebfore they made the choice if he would get chemo. Nothing like keeping us on the edge of our seats.  We then went to lunch when it was all done and Kohl’s after that. This girl is on the mission to find new boots, and not having any luck.  We got home in time for me to head to work. Max was napping so I didn’t get to see my little guy all day. Work was ok. My mom picked up Bella and spent time with the kids. I got home and hung out with the kids . We did a movie night of Max and Ruby while gearing up to go Purple.

Pictures from the last week

Josh has done all of these except Clinical trails and Chemo and Surgery have been twice. We would love to get into a trial, but so far he’s not qualified for one. We are keeping a look out for one that would be better then chemo for Josh. Josh said he would do surgery again as it was a quicker recovery then chemo. I’m personally happy that the chemo is just helping to keep Josh alive a little bit longer. We find out in a couple weeks if it’s still working to kill the cancer cells.

Day 11

I’m thankful for my freedom. Thankful for all those who served our country .
Yesterday was a crazy day as normal, but in the middle of it, Josh, Max and I got to see the SJB veteran's day program at SJB. All of the kids did a great job.



This is what Josh and I have been trying to do for the kids. Make Memories that will last forever. We have done a lot of things to help the kids remember the memories sicne they are at such a young age. We have created photobooks with pictures of them with Josh along with spaces for him to write about his feelings and thoughts for them. We have created daddydolls that are images of josh on a doll with a voice recorder in them that he has recorded a message for each of them We have done a book all about Josh, his life, thoughts, likes/dislikes, and history.  We did that special trip to florida as a way to make memories with the kids two years ago. We take lots of pictures and display them all around too.  Cancer might take my husband from us early, but at least we have the warning and I’ve been able to create so many things to help the kids remember how much he loved them.

day 10

Thankful for Coffee. I don’t care what type of cup it comes in, but it’s the pick me up I need to get through the day. Sometimes I get the sleep I need, but most nights I don’t. Also dealing with preschools three days of week I need a little extra energy.

yesterday was so a Monday. Josh thankfully took Bella to school so I could start cleaning what I would normally do on the weekends. I hung out with Max while doing the laundry. he helped me to put things in the washing machine and carry the baskets. He also played around me too.   Then I snuck out for work. He wasn’t happy, but better then him begging me to stay. Work was ok. It was a rough Monday of everyone getting back into routine. .I got home and it was supper, homework, picking up and bed.  Then Josh told me about some symptoms that kept me up late again because I was worried about what they could mean. 

Many times Something will happen to Josh that wouldn’t be alarming to a normal person, but to someone with cancer, it means that something might be going on that could be bad. We struggle with trying to figure out what symptons are normal and what ones are not.  Many times extra doctor visits and hospital stays are the only way to confirm what a symptom is. 

Josh has two internal/ external drains.This means that they do drain some inside of him, but when they are clogged, then they can drain outside of Josh’s body into bags, sometimes more often if they are leaking. They leak which is bad for the skin which can make Josh’s skin inflamed. There is no way to stop the leaking nor does anyone really know why they leak. We have some ideas like when Josh has fluids they leak more. The drains themselves need to be flushed at least once a day. Often one drain is slowly bleeding. This was a big stressor in August, but now we know it’s normal. Every two months the drains need to changed out, which means a day in the hospital. Josh needs to wear drainbags for 6 out of the 8 weeks. It causes him pain about about a week after the change in drains.  On the plus side, these drains have allowed Josh’s liver to continue to function even though the tumor is trying hard to take over the liver. They have prevent infections caused by backed up bile. So far they have given josh 6 extra months, that he probably wouldn’t have had without them.

day 9

Thankful for our everyday lives. This weekend was really busy. I was gone to the Mall of America with some girlfriends. The kids got to see Aunt Tracey, Uncle Andy, Nana and Aunt Darlene as well at hang out a little with daddy. I’m so tired for the weekend and have so much to do to catch up, but grateful to get back to our routine.

 

This cancer has consumed a lot of our lives. Caringbridge has a lot of our journey. Josh has had Surgery, Radiation with Chemo, then chemo, then surgery again with some chemo before we got to the point where we are.  Once a week Josh goes to get bloodwork done. The the next day we spend 3 to 4 hours at the clinic for Josh to get chemo. Chemo that has taken his hair, makes him nauseous, lowers his abilities to fight off infections or a simple cold. His red blood cell count causing him to be anemic and tired easy. he’s short of breath often due to the build up of chemo in his toxic body. Until he lost his hair, most people wouldn’t have known he was sick. Even now a lot of people don’t realize how sick he really is. He fights everyday to be up with the kids, help out with the house , and going out to do what he loves because he won’t let the chemo and the cancer control him.

Day 8

Thankful for my sister and my mom.  They have helped out so much with everything for my whole life, but especially the last three years. I’m lucky that while I’m gone for a weekend away they were able to help out and hang out with my kids giving Josh a break in case he’s not able to watch the kids or would have been in the hospital. 

 

In order to give Josh the best chance to beat this cancer, the doctors wanted the cancer out. The only way to do that is a procedure called “The whipple” The chart below shows what happened to Josh and he had a long recovery. It also explains why he’s not able to process food like he could before. While he can eat all he wants he’s not able have it digest they way it would for a non-whipple person. 

The Bile duct’s new attachment is what has been causing so many problems for Josh with this most recent cancer or at least why he needs to be on antibiotics. They is no way for the duct to close off to the intestine so the bacteria gets in the wrong spot, causing his infections.

Day 7

Today I’m thankful for my wonderful husband who is holding down the fort at home so that I can take a weekend away with the girls for some me time. I don’t get a lot of time away because I want to spend my time making memories with Josh.

Since I don’t have much to say about what has happen as I’m working on this while I’m out on vacation, I wanted to say a little background about Josh’s cancer. Josh was diagnoused with Ampullary Cancer. Ampullary cancer is a cancer that arises from the Ampulla Vater. The Ampulla Vater is a nipple like projection into the duodenum (the first portion of the intestine) into which the pancreatic and bile ducts open. All of the pancreatic and biliary secretion enter the duodenum through the Ampulla Vater. There is very little information on this cancer. When Josh’s tumor was removed they were unable to figure out what cells made up the tumor. Had the tumor been larger or had longer to grow we might have a different result.

All of the information that has been learned about this cancer has been a byproduct of Pancreatic cancer research. The treatment is the same. So in order to better find out info on Josh’s cancer there needs to be more learned about Pancreatic cancer.