I can't believe she is 14!!

Katelynn turned 14 years old today! She is growing up so fast. We had a party for her on Sunday!


This is my first fondant cake. It was fun but a lot more work than a regular cake but the end result is much better!




She did get a phone for her birthday. She was so excited! I hid her phone behind our Christmas tree and after she was all done opening presents she looked a little disappointed (cause she thought she might get a phone). So Jonathon called her phone and it started ringing. I thought she was going to knock over the Christmas tree trying to get to it. It was so funny!

Decorating the Christmas tree

For family home evening tonight we decorated the Christmas tree. I think the kids did a good job and only 1 broken ornament this year. I think that is a record.

1st Day of School!!!

Kristoffer is so excited to go to school! He was very nervous (so was his mother). It is very hard to leave him after we have been trying to protect him from germs for so long! So I just had to take a deep breath and go!

Our trip to Disney World!!

We had an amazing time on our trip. It was so nice just to relax and have fun and not even think about cancer! All of the kids loved it. I have posted a slide show to show some of our fun times!

Bye Cancer, We Won't Miss You!!

So the CAT scan came back with great results.  No sign of cancer!!  So what do we do now...we are going to Disney World!!  Now I know how all those athletes feel after working so hard for what they want and then they are asked that question!  What are you going to do now?  Kristoffer does still has some spots on his liver that look like scar tissue from when the tumors were shrinking!  We will monitor those spots closely to make sure they do not start growing but the doctor feels like they will be fine!  In 3 months we will have another CAT scan to check these spots.

 I don't know how to thank my family and friends enough for all that they have done for us!  We couldn't have made it without them.  I have the best in-laws, the best parents, the best sister and brothers, the best cousins, the best aunts and uncles, and the best friends.  So many people have donated money, time, food, babysitting, cleaning my house, toys for Kristoffer, tutoring for Kristoffer, rides for my kids to school and sporting events.  Many family members stayed the night at the hospital with Kristoffer so that I could spend time with my other kids.  They were able to have fairly normal lives thanks to all our family and friends.  Connor is probably not sure if I am his mom or if it is my sister in law Kristi!  Kristoffer thinks Aunt Becky can hike the ball the best.  Everybody has helped in so many different ways and we definitely could not have made it through this without all of the help!

This has changed our outlook on life. Sometimes we just get caught up in our own world and need to remember others as they go through difficult times. We have a whole new look at the world and we need to be more giving and more productive members of society.  That is my new years resolution (a little premature).  Usually it is to be more organized but this year I will have to have more than one!

Precious moment

This is a rare moment in our house. Usually our boys are wrestling. They were so sweet and very engrossed in their movie! They didn't even know I was taking pictures! I wish we saw more of these quiet moments! I love them!

Pumpkin carving

Ashley and Connor had a great time carving their pumpkins on Halloween. Kristoffer was bored after about 10 minutes. So he never finished his pumpkin!

Trunk or Treat

My kids dressed up as Little Red Riding Hood, Bumblebee, Optimus Prime and Katelynn went as a naughty teenager. We went to the churches "trunk or treat." It was freezing but the kids had a good time!!

Snow!!!

We got up really early this morning to be at UNM by 9:30. We got about 20 minutes away from home and decided to turn back around because we didn't want to die on the snow packed roads. So we rescheduled the CAT scan for next Wednesday!!

We are finally done!!!!

This is Kristoffer getting his last dose of chemo!!! He was so excited. His counts even came up enough today that we could have brought him home but Connor has a flu bug so we did not want him getting it. We will hopefully bring him home tomorrow.


The doctor and nurses were so sweet and had a little party for Kristoffer with pizza and cupcakes and of course presents! He was all smiles! We have loved the staff. They have helped make our roller coaster ride a little more tolerable.

What's next??

After Kristoffer recovers from this round of chemo, we will have a final CAT scan on the 28th. Then he will have his heart checked to make sure no damage was done during chemo. He had it checked halfway thru and it was normal. Then we will have our final appointment with the doctor on November 9th. We will find out the results of all the tests at this appointment. Then we will be done!! Yeah!! They will do a CAT scan every 3 months for the first year to make sure nothing is coming back! After that I think they do a CAT scan annually. These scans will all be compared to the scan he gets on the 28th. I will be a nervous wreck each time he gets a new scan. The one on the 28th should be normal.

Our last visit to the hospital!

Well we are back in the hospital with low counts for what I hope will be the last time. Kristoffer came in for blood and platelets and wouldn't you know it his temperature was right at the 100.4 cut off for being admitted. So what was supposed to be outpatient is now inpatient. I knew it was coming, I just hoped it wouldn't. The skin around his poor feeding tube starts to break down when he has no immune system. It is painful for him. I hope he rebounds quickly! Poor baby is sick of this roller coaster. His mom is too!

Random pictures

Kristoffer has a little cold right now which we are praying goes away before his immune system goes down this coming weekend. He is watching Connor play the Nintendo DS! This DS has been a great source of entertainment for the many long stays in the hospital.


Kristoffer loves his cousin Bella!! He just lights up when she is around!

Button, button who has the button

Kristoffer does!! Today we are having the GI doctor remove Kristoffer's feeding tube and replace it with a button that is just flat against the stomach. You can open it up and put food in and close it when you don't need to use it. It will be much nicer for him. Better than a 6 inch tube hanging out his stomach! We are officially done with the worst chemo drugs. No nausea or vomiting! But it can take 6-9 months for his appetite to be back to normal so we will leave the "button" in until we feel he will be fine without it. So maybe when he is 18 we will take it out. Just kidding!

Is this really the last round of chemo?

Kristoffer's counts came up enough for chemo this week. We are at UNM today and tomorrow to begin the last round of chemo. His red blood cells were low so he also had to have a blood transfusion. I hope he doesn't have any nausea or vomiting. They lowered the dose 25% again because his body is just so tired! I am hoping this will keep him from running a fever and getting too low again. It has been a long 9+ months. What was life like before the C word came into it?

Counts are too low!!

Well we had labs drawn on Monday and Kristoffer's platelet counts are too low to have chemo this week. We are aiming for next Tuesday for chemo if his counts are high enough. This is the first time the platelets have struggled this hard to come back up. His body is getting tired. I am so glad this is his last round of chemo.

Long week

Well it was a long week in the hospital.  We went in last Saturday and came home on Friday!  He is supposed to get chemo again on Tuesday but I don't know if his counts will be high enough!  We will find out on Monday.  He just seems so weak!  He doesn't really want to eat much.  Thank goodness for the feeding tube.  We really need to be done.  On a lighter note, Jonathon was trying to help me out and gave Connor a desperately needed haircut.  There were a few mishaps and Connor didn't help things when he got a hold of the clippers later and gave himself a trim.  Needless to say he now has very short hair.  He is so blonde, he almost looks bald.  Now I have two bald boys. He was pretty proud of himself as you can see from this picture.

Low counts

Well surprisingly we are back at the hospital with low counts again today. Kristoffer was running a fever so we brought him in for platelets, blood and antibiotics to prevent infection since he can't fight it off himself. I know we are almost done with his treatments but it sure didn't make it any easier to bring him in today. His counts keep coming up slower and slower which means he has to stay longer and longer!! It just stinks!! We miss our lives.

UNM

Kristoffer is doing really good with this round of chemo. No nausea or vomiting and only two days to go. The feeding tube looks really good and is no longer causing pain. Kristoffer also has a really big appetite which is rare. He is loving the pancakes and apple jacks. Of course the hard part comes when his immune system hits the floor and then he is just weak and won't eat. So we should be going home on Saturday as long as he doesn't have any nausea or vomiting. I am in countdown mode now. Each day I think to myself, that will be the last time you have to get that drug or do this test or whatever it is. After he recovers from this round of chemo he will get one more 2 day round which is a little easier on him. Once he recovers from that, HE IS DONE. I cannot believe this nightmare is almost over. I can't remember what a normal life feels like. I know I will probably always be holding my breath every time he gets a check-up which will be frequently at first and then every year after the first year.

Finally healing

Well Kristoffer is finally healing. Once we went home from the hospital, Kristoffer's pain in his stomach got a lot worse and he started draining a lot of fluid from around his feeding tube. So we took him to UNM to see the GI doctor that put the tube in. He told us that Kristoffer had developed an ulcer from the feeding tube. He was in a lot of pain. That was last week and this week he started running a fever again even though his counts are fine. So we took him to the ER again and they tested everything and decided he was fine so they sent us home. He ran the fever for one more day but seems fine now. His stomach hurt for about a week. It finally looks like it is starting to heal. He is supposed to start another week of chemo Tuesday depending on how his stomach is healing!! This will be his last 5 day round of chemo. Yeah!!!!!!!!!!!!!!!!!!!

Getting caught up on my posts!

Well I have been a terrible blogger lately. This hospital stay is starting to wear on me and I just haven't wanted to blog much so I am trying to get caught up so scroll down for more new posts!

Kristoffer is STILL in the hospital. What a nightmare this feeding tube has been. It has hurt worse that the surgery to remove his kidney did. So we started with the infected port. Well all of the antibiotics caused a yeast infection around his feeding tube which is quite painful. He also got a nasty intestinal infection. Then in the middle of all that his immune system bottomed out from all of the chemo. I don't know how much more Kristoffer can take. We are still in the hospital and hoping that in the next few days his counts will be high enough to take him home.

Nurse "My Love"

I know I have mentioned nurse "my love" before. Well here is a picture of her:


She brightens Kristoffer's day!!


Kristoffer took this picture. Quite the little photographer!

My trip to Atlanta

I had so much fun on my trip to Atlanta. All of my dad's side of the family lives in Atlanta. I have not been there for 7 years. I am not going to stay away that long again. I missed everyone too much. Here are some pictures of my trip:


Jonathon's Aunt Melissia and her friend Jory live in Atlanta. So I got to visit with them for a while.


We had the best time swimming in my Aunt Teri's pool!


My sweet Granddad. He will be 90 in February.


The whole crew. They are too much fun!


My Granddad, me and my Dad!! I miss them!


My Granddad, me, my Stepmom Kathy and my Dad!

The 1st day of school!!!

So school FINALLY started!! My kids desperately needed to get on a regular schedule. They were so excited to start.

Update

Kristoffer is back at our local hospital now and is doing really well. He is tolerating his feedings through his feeding tube and his counts are good. They will probably start to drop around Tuesday. He did have to get blood on Thursday but Grandma was generous enough to give him hers. I am in Atlanta visiting my dad's side of the family. I am having a great time. I wish I could stay a little longer. We are having a big family dinner tonight. I need to try to come here more often. I really have missed them. It has been a nice break so hopefully now I will have renewed energy to last these last two rounds of chemo!!

Progress

So Kristoffer has had a rough week. I think we are finally making progress. His blood cultures are negative for bacteria which is great. He still has to get IV antibiotics for 8 more days. The chemo made him so sick this time. Lots of nausea and vomiting. They finally gave him a very strong dose of Zofran which seems to be working. Now the tube feeding will actually stay in his belly. We are hoping to transfer him back to our hospital so we can be closer to home! Is it terrible that I am still planning to go see family in Atlanta on Thursday? I already had my ticket and I did not think Kristoffer would still be in the hospital. I have great family helping with our kids and I really want to see my family. So that is the plan for now.

Really???

Today was better in some ways and worse in others. Kristoffer has not had any pain since yesterday. There is also less bacteria in his port which is good but now he is vomiting from the chemo. We solve one problem and then another one starts. Poor baby. He hardly complains at all. We will see what tomorrow brings!

Tough day

Today we found out that Kristoffer has a bacterial infection in his port. So now he has to be on IV antibiotics for ten days. Also his platelets dropped too low to get chemo. So we are pretty bummed. It just seems like its one thing after another. So we will just have to wait and see how he does tomorrow. Everything depends on his labs. We are hoping for the best. His feeding tube is not hurting as bad as yesterday. So that was one good thing.

The Feeding Tube

Well the feeding tube was placed today. I know in my head that he needs it but I felt like the worst mom putting him through another surgery. It was hurting pretty bad this morning but he is doing a little better now. Gotta love morphine. We are hoping to run the feeding in at night and let him eat normal during the day. We will wait to start chemo until tomorrow to give him a day to heal.

The Plan for the Week

Tomorrow we will head back to UNM. They are going to admit Kristoffer and see why his port isn't working. Then on Thursday morning he will get his feeding tube. Once his port is fixed they will start his two days of chemo. If his pain is fine after chemo then we will get to come home. So we will just have to wait and see how good he does after the port and feeding tube are in.

Happy Birthday Ashley & Connor

Connor and Ashley had to share a birthday party this year. With Kristoffer in and out of the hospital it is hard to find time to have parties.


Connor was so excited. I think he got everything he wanted. Spider-man toys, Thomas the train, cars, trucks, animals, etc.


Ashley felt a little slighted this year. She really wanted to have a big slumber party with some of her friends but we just didn't have the time this year. So maybe next year.


She did love all of her presents and is looking forward to shopping with her birthday money.

We Caught a Break

Okay so Kristoffer's counts were too low to go to Albuquerque today!! I know this isn't really something to celebrate but it means the Albuquerque trip will wait until next week. Oddly his white blood cells went up and his red blood cells and platelets went down. So he had to get 1 unit of blood and 2 units of platelets but because he had white blood cells we get to come home. Yeah!! Kristoffer also got a special gift. A football player named Wes Byrd from Eastern New Mexico University came and donated blood for Kristoffer and brought Kristoffer a hat with his signature. Kristoffer was so excited. Thanks Wes!! Here are some pictures:




Connor got a new pair of sunglasses. My boys keep fighting over them because apparently these are spider-man glasses. But they do look cute on them.

Can We Catch A Break Please!!!

It has been a long weekend. We had to celebrate the 24th of July and try to balance having Kristoffer in the hospital. His counts have started to come up which is great. We were hoping to bring him home today but then his port stopped working. Which means we couldn't give his IV nutrition to him. So now if his counts are high enough in the morning we are heading to Albuquerque and he will have to have his port replaced and a feeding tube put in. What the HECK? And to top it all off Kristoffer started having nausea again this morning and threw up twice. Where did that come from??? He hasn't even had chemo for 9 days!!! And he didn't throw up once. Can we please catch a break before I lose my mind? Sorry I just needed to vent for a moment to try and keep my sanity!! I think if I spend one more night in the hospital I am going to have an anxiety attack!! I can't imagine how Kristoffer feels!

Kristoffer is doing good

Kristoffer is doing good. He is going to get more blood tomorrow and had more platelets today. His counts are low but his fever is gone. So he is doing much better than last time. He is loving his peanut butter crackers. He is supposed to have his feeding tube in on wednesday but it looks like it might have to wait a week until his counts are higher.

Back to the hospital

Well we are back in the hospital with a fever. He also needed blood and platelets. Thanks to all those that donated blood. Kristoffer did not have to wait for blood today. It is greatly appreciated. His white cell count is 100, which is better than 0. Hopefully we won't have to stay as long this time.

Boredom

We will be coming home tomorrow. Staying at UNM over the weekend is so boring. There are so many other things I would rather be doing! We cannot wait to be home. Kristoffer is done with chemo but we are getting his nutrition under control. No nausea or vomiting since Wednesday so he is doing good and ready to get home!!

A few updates

Connie brought the girls to UNM to see us today. It was a nice visit. Katelynn is a good entertainer for Kristoffer. She keeps him happy!! I haven't been blogging as good as I should so I will try to do better. So I put a few posts on here to update everyone.

The Plan for Now

So we have decided that the time has come to put a feeding tube in Kristoffer's stomach. It will go directly into his stomach so that we can give him more nutrients. He just will not eat anything good and can't make the cells he needs to fight off the chemo without better nutrition. The IV nutrition is only a short term solution! He can still eat normally during the day and we can run in nutrients during the night. We were hoping not to have to do this but his appetite is not coming back and he is becoming malnourished. We did have to deal with a not so friendly GI doctor. He only does surgery on Wednesdays. Well Kristoffer's white blood cells will be on their way to the toilet on Wednesday. I tried to tell him that but his comment to me was "well that is the day I have open so that is when I will do it." Who in their right mind would do a procedure on anyone with no white blood cells. So I complained to the oncologist who agreed and we changed the date to the 29th when hopefully his white blood cells will be on their way back up! Some doctors just chap me. I feel like such a complainer, but they can be so unreasonable and careless.

Patch Adams

So remember the movie "Patch Adams?" Well meet the real Patch Adams. I have never seen the movie but this guy was pretty funny and VERY weird. He would do whatever he had to do to make Kristoffer laugh including burping.


Yes that is a chicken on his head.


And that is a rubber fish in his lap. He tried to kiss the boys with it but they were not having that!!


He let Kristoffer win at UNO which made Kristoffer very happy! There were other clowns with him as well. It is a very nice service to make it your goal to make these kids laugh. Heaven knows they need a good laugh from time to time!!