Update

We are home for the weekend. It is hard to be too excited when I know we have to go right back on Sunday night for 5 more days of radiation. Kristoffer is doing good. He was having trouble holding still for the radiation so we were not able to do radiation on Thursday and they gave me medication to help him sleep during the treatment. The problem is that I give it to him before we leave the camper and he is asleep when we get there and I have to carry him in. He's heavy. But at least we know he will hold still. This does push us back one more day. I won't have as much computer access as I have had because radiation is all outpatient and I don't have a computer in my camper. I will update when I can. We are just praying that Kristoffer does not run a fever next week causing him to have to be admitted to UNM and not allowing us to come home.

Radiation stinks!!

Just a little update on Kristoffer. We are back at UNM today. He had his first round of radiation today. It was a little harder than we had anticipated. He was very intimidated by the whole thing. He was scared to lay on the table. Then he got really sick for about the next 4 hours. He threw up 5 times and took 2 naps. Poor baby. After radiation they admitted him to the hospital for chemo. The doctor took pity on him and gave him some Zofran (the magic anti-nausea drug). He has been fine ever since! He gets Zofran before each chemo treatment and now they will give it before each radiation treatment so that this won't be a miserable experience. We love Zofran.

WE ARE HOME!!!

They finally let us come home. Yeah!! Kristoffer's appetite immediately improved once we got home. It's amazing how being home can do that. He is doing really good. He hasn't had hardly any pain either. It is the best feeling in the world to walk in to your own home. I have always just taken our home for granted. I appreciate it so much more now. Many thanks to our family who help keep our house clean and our kids taken care of. We appreciate all you do!!

Kristoffer's fever finally came down. They have taken out his IV and we are crossing our fingers that we will get to go home today!! The resident said maybe but the Doctor has not been in yet. The one thing Kristoffer is not doing well with is eating. He has no appetite yet! We are hoping that gets better as soon as we get home.

My mom and Larry brought my girls to visit today. The kids had a good time being together. Kristoffer hasn't felt his best today. So he has been pretty cranky!! I wish Doctor wait and see would start to figure out why he is still running a slight fever. He still wants to "wait and see". Shocking!!


Silly Connor put on these funny glasses. He has a pretty good sense of humor. He thought he was pretty funny. Kristoffer gets mad when you make him laugh because it hurts!! Pay no attention to the booger picker in the background!

Frustration

We are a little frustrated today. Kristoffer has had a low grade fever ever since surgery. Last night it spiked up to 103.6. The Doctor finally ordered labs. He has not had labs drawn ever since surgery. Kristoffer's white blood cells have increased which is a sign of an infection. They did a chest x-ray and ruled out pneumonia. Kristoffer also looks like he needs a blood transfusion but Doctor wait and see wants to "wait and see" if he comes up on his own. He also wants to "wait and see if the fever goes away on its own. If not they are going to do a CT scan of his abdomen tomorrow and see if he has an infection in there. I just can't believe they would let a child with cancer run a fever for 6 days. It just kills me! We tried to get the oncologist involved but they said they can't overrule the surgeon. We feel a little helpless and frustrated at the lack of caring. Kristoffer is doing a little better as far as his pain goes. We have gone to the toy room the past two days.

No more tubes

Kristoffer finally has all his tubes out. He was so happy. It also makes it a lot easier to move him around with the tubes out.


The tubes hurt coming out but Kristoffer is so glad to be tube free. The only line left is his IV line.


We had a special little visitor join us yesterday. Our friends brought Connor to Albuquerque for us so he can help lift Kristoffer's spirits! Kristoffer loves having Connor here. He smiles more when he is here. We have also missed the little booger. We are glad to have him here.

Boredom

I think this picture says it all. We are all so bored. Kristoffer can't stand for very long yet plus he has all of these tubes attached to him so Jonathon and I have to hold his basketball hoop while he shoots to try to keep him entertained. He really wants to go to the toy room but we have to lose a few tubes before we can start wandering around the hospital. He is supposed to lose the epidural and catheter today but if the bowels don't start working we might have a NG tube forever. I'm sure anyone who has ever had surgery understands what I mean.

Kristoffer's Progress

Kristoffer is doing about the same today. He still has his epidural which is controlling his pain nicely. He also still has the NG tube. Once his bowels start working we can pull that tube. The epidural will be removed tomorrow. He did walk a few feet in his room this morning. He is a little shaky but he did very well. We FINALLY talked to the radiation oncologist today. He gave us great news. He said Kristoffer will only need 11 days of radiation instead of the 6 weeks we were told in the beginning. I can handle two week in Albuquerque but 6 weeks sounded like way too much. He also said Kristoffer would be getting a very low dose of radiation because his type of tumor responds very well. All of this is music to my ears. They are also going to let Kristoffer have 1 more week off before he starts his next round of chemo/radiation.

Some more pictures

We were able to get Kristoffer up in a chair. He stood and turned around to sit down. He does have a "walking epidural" so he can still feel his legs.


He is still very groggy from his medications. He has a hard time keeping his eyes open even for a picture but he was doing his best to smile. Sweet boy!



Aunt Becky gave him a new basketball and hoop. He perked up to throw a couple shots.

A Good Night

Kristoffer had a really good night. He has not had any pain at all thanks to a wonderful epidural. He did decide to remove his NG tube during the night while nobody was watching. He wasn't very happy when they had to put a new one in. As soon as the surgeon comes in we can start trying to get him up and moving. His vital signs are all really good. He really is a tough little guy. I will try to post some pictures later if we can get him moving.

Kristoffer's surgery

Before Surgery:
Kristoffer was just as happy as could be before surgery. He really didn't know what he was in for.





After surgery:
Poor baby!! Kristoffer did awesome during surgery. They removed the kidney, tumor, two lymph nodes and two small spots on the liver. Kristoffer did not lose much blood and did not have to go to the ICU. They had a room reserved for him just in case but thank goodness he did not have to go. He does have a NG tube in his nose to keep him from throwing up. It is driving him crazy. He has an epidural which is wonderful. He really hasn't had much pain at all. He does have a large (6 inch) incision from his sternum to below his belly button. One of the first things he said after surgery is "I want a coke."

Surgery

We met with the surgeon today. Kristoffer will have surgery on Monday. They will remove the left kidney, tumor and 1 lymph node. The surgery will last from 4-5 hours and the recovery should be around 5-7 days.

Women's Conference

My mom and I went to women's conference this year. It was awesome. We enjoyed all of the classes and the shopping.


Elder L. Tom Perry was the concluding speaker. There is always a special feeling when an apostle enters the room. I don't know if you can see Elder Perry and his wife in this picture but they are waving.

Kristoffer is doing great!

Kristoffer is doing great. We had all of his pre-op tests done on Tuesday including the CT scan, unfortunately we still do not know the results of the tests. The doctor was leaving town shortly after our appointment. We will see the surgeon this coming Tuesday and schedule his surgery and know the results of his tests.


As you can see from this picture he is loving just being a little boy. A very active, silly little boy. We are a little worried about a nasty flu bug that is going around in Kirtland so we are still trying to keep him a little isolated to protect him so he doesn't get sick before surgery.

A Face Only A Mother Can Love!!

Connor decided to paint his fudge bar all over his body. From his hair down to his toes.


Mommy loves you pumpkin!!