Chemotherapy started last night and so far we haven't had any nausea or vomiting. He slept through the night except when he needed to go to the bathroom. The nausea can last 2 days so we will keep praying that it stays this way. He just asked for breakfast so that is a good sign. We'll keep you posted.
It is the hardest thing as a mother to sign a consent for someone to run poison into the precious body that you helped carry and take care of. It breaks my heart. At this time Kristoffer is getting an anti-nausea drip to help lessen the side effects of the drugs. After this is thru he will then start the chemo. My husband and father-in-law gave him a blessing today. He doesn't understand but the power of that blessing was a comfort to me. We will let you all know how this goes. I will also try to post a picture of him if I can figure out this computer.
OK, so we met with the Doctor for about 3 hours today and we now have a plan. Kristoffer will have to receive about 31 weeks of chemotherapy. About halfway through he should be able to have surgery to remove his kidney and tumor. During this meeting we had to go through all of the drugs and their side effects. Talk about heartbreaking. My chest just aches at the thought of having to watch my baby go through this. He will not be able to go to school or church while his immune system is down. That will be so hard on him because he loves school and church. I hope this time goes by really fast and his suffering is minimal.
So could somebody please tell me why we have been waiting on a sample to be read by a pathologist in Chicago that Phoenix Children's hospital just sent today. They will be getting a strongly worded letter from me when this is all done. Jonathon is my rock. The plan however, since we don't want to wait another week, is to start treatment on Friday for the more aggressive type of cancer. This will be harder on Kristoffer but will make sure we get it all. I read today that this type of tumor doubles every month so waiting makes no sense to me at all. He did have a bone scan done today and hopefully that will be negative as well. Thank you for all of your thoughts and prayers!!!
We got to UNM this afternoon The rooms are much nicer and bigger and private. Still no results yet. Apparently the problem is that the sample is small. We are praying that they don't have to do another biopsy. THis is such a nightmare. I didn't realize diagnosing a tumor would be so hard. I just want someone to say this is what it is and this is how we get rid of it.
We are supposed to be going to UNM hospital later this afternoon. They will be flying me and Kristoffer and Jonathon will be following us. Kristoffer is doing fine today. He is a little tired but otherwise good. Still no word on the pathology results. I will hopefully be able to continue updating from UNM. I will try to do that after we arrive this evening. Thanks again for your prayers!!!
I just wanted to give a little shout out to my little Ashley. She got 1st place in the science fair at school. She worked really hard on her project and we are very proud of her and sorry we couldn't be there to celebrate with her. The distance is hard but necessary. We love you Ash!!
Kristoffer has had a great day today. They took his foley out this morning, which he was thrilled about. Then we went to the play room for 2 hours. He was having too much fun. As you can tell he has gained a few pounds around his middle and he has a little bit of edema in his legs from all of the fluids and bedrest. But the more we walk around the better it is getting. He weighed 58 pounds yesterday and was 55 today. Most of the weight loss is water weight. We are still waiting on the pathology results. Everything depends on those results so we really can't do anything until then. He did eat lunch today also. He hasn't had much appetite since surgery so hopefully we will be able to take him off of his IV fluids tomorrow and they discontinued his antibiotics today. We will update the blog as we know more. We appreciate all of your thoughts and prayers.
So my hat is off to my cousin, Baric. He called the Cardinals football team and told him about Kristoffer. If you know Kristoffer you know he loves to take his shoe off and use it for a tee so he can be the kicker. So the Cardinals told Neil Rackers (their kicker) about Kristoffer and he came to see my Kristoffer. He brought him his own game ball and a hat and pictures. Kristoffer told him he could kick the ball higher and he told Kristoffer that after the superbowl he was coming to Kirtland to see. It was precious.
These are picures of Kristoffer today in the toy room. He is having a good day today.
As some of you may already have heard we have had some recent bad news. On Wednesday, Kristoffer had a fever and said his stomach hurt. I took him to Urgent Care at 7p.m. They did an x-ray of his abdomen and saw a mass but didn't know what it was so they sent us to the ER. They did a CAT scan and found a tumor larger than a grapefruit on his left kidney and several walnut size tumors on his liver. Needless to say I am devastated. We were life flighted to Phoenix Childrens Hospital early Thursday morning. They did a CAT scan of the lungs and found no tumors. Finally a little bit of good news. On Friday morning the doctors performed a biopsy on the kidney tumor. It is very large. They think it has grown just over the past 3-6 months. We will hopefully get those results soon as some tumors are better than others. Kristoffer has been quite a trooper through all of this. The biopsy was quite painful because they had to cut through muscle and move intestines around to get to the tumor. He didn't do much but lay in bed the first couple of days but today we were able to walk him to his wagon and take him to a special toy room for the children with cancer. There I said the C word. It is horrible to see him suffer and not be able to make him understand. Through all of this even if he is in pain when the nurse walks in and asks how he is doing he says, "great." He is such a special boy. The plan for right now is to hopefully get the results of the biopsy tomorrow, then we will start doing scans of all other parts of the body to make sure how far it has spread. Hopefully nowhere! Then we will form a plan for his chemotherapy to shrink the tumor so that it can then be removed. We are hoping to do most of the chemo at UNM so that we will be closer to home to be with our other children. I will try to keep everyone updated through this blog daily. Thank you to all who have prayed, fasted, sent gifts, or helped with my children. The outpouring of love for this child has been amazing. We can feel all of this love for him. He is our special boy. I will keep you all updated and try to figure out how to post pictures of our little trooper.
