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!!

A little nausea

Well Kristoffer vomited twice this morning. The drug he got yesterday is really hard on his tummy. Thank goodness he only gets it once during the week. He actually only has to get it one more time during treatment. He doesn't act like he doesn't feel good though. He is still up playing games and acts like he feels fine. So hopefully this round of nausea is already starting to pass! The CAT scan Kristoffer got in Farmington last week shows no changes. Which is good news because that shows that nothing new is growing and the chemo is working. I did find out that Kristoffer will have to be re-immunized about 6 months after chemo because the chemo wipes out all of his immunizations. Bummer. We will face that when we get to that point.

Back to UNM

Well we came back to UNM yesterday for another week of chemo. Kristoffer cannot get the IV nutrition and chemo together so we have stopped the IV nutrition for now. He is eating a little better but not good enough. We are considering a gastric tube for the rest of chemo. It is a tube that goes directly into the stomach so we would do tube feedings at night and let him eat normal during the day. They also want Kristoffer to stay in the hospital for his whole treatment from now on. So we are going to bring our camper home this week. He had a hard time with the last treatment so they want to monitor him more closely. They did reduce his dose of chemo by 25%. So hopefully it won't suppress his immune system for as long. They actually didn't start his chemo yesterday so that does put us a day behind but we are hoping this week goes by fast!!

Fun in the Sun

Kristoffer needed a day of fun so we let him play on his Grams' waterslide. It was windy so we didn't play very long but he had a great time!


Silly Boy!!


Connor is a little dare devil. He goes down head first!

A few days off

Kristoffer is finally home for a few days! The only tummy troubles he is having is a little nausea and vomiting every now and then. We are still giving him Zofran and it does help a little. So the doctors just want to make sure he is okay. I think we have been incredibly fortunate that he hasn't been nauseated up to this point but now his little body is just getting worn out. So we will be back at UNM for our appointment on Monday.

Going home!!

So here is the plan!! We are going to be going home on Wednesday! Today and Monday they have let Kristoffer come home for the day and then he has to come back at night for his IV nutrition. He is starting to eat much better but he still has episodes of nausea and some vomiting if we don't keep the Zofran in him. We will start doing the IV nutrition from home starting Wednesday night until Sunday night. We will be heading to UNM on Monday to start another week of chemo assuming his blood counts are high enough. The doctor also wants to do some tests to see why Kristoffer's belly is still having so much trouble. They are talking about reducing the dose of chemo by 25%. They do want to figure out his tummy troubles however before starting chemo. At least he will be able to be home for the rest of the week. Yeah!!! He is loving being home and so am I!

Cousins

We Love our cousins. We had family pictures a couple weeks ago. The kids love getting together. They have the best time!

The Healing Garden

Yesterday the nurse let Kristoffer go out to the healing garden to play with his brother and sisters. He had so much fun. We played baseball and ate lunch.


This is what Kristoffer's face looks like when you ask him to eat lunch. Needless to say he didn't eat.


He was feeling a lot better being outside and relaxing. I've missed this smile!


He missed his siblings. He lights up when they are around. We have been keeping them away so he would not get any germs.


Connor had fun playing in the little creek in the healing garden! He almost fell in a few times.


Such sweet boys!!

300 White Blood Cells

Kristoffer has 300 white blood cells today. He did have to have another blood transfusion and platelet transfusion yesterday. So those numbers are up a little bit. He still will not eat and did throw up twice last night. Poor guy just is having a hard time getting over his nausea. The TPN is helping him get his energy back a little bit. He has been up playing baseball and basketball a little bit more. That is better than him lying in bed all the time. That was scaring me!

Finally!!

Well we do finally have some white blood cells. 100 to be exact. 100 sounds better than nothing. Kristoffer is still receiving TPN which is good because he still doesn't want to eat. Unfortunately his red blood cells and platelets dropped but we are going to wait on a transfusion until we see what his labs are tomorrow. The doctor is hoping everything will start going up with the white blood cells. Kristoffer is O positive which is in short supply in this area, so if you are a match please donate!! If he doesn't need any more blood with this admission he will probably need blood with the next admission.

Kristoffer has 4 hard treatments left. They are supposed to be completed within a 12 week period starting this Monday. I really don't think he is going to be ready for a treatment since he is still so weak from the last treatment. I don't know how he is going to be strong enough for 4 more so we will talk to the doctor about what our options are!