January 26 - Delayed Intensification - Day 13

We are still in the hospital, but things are stable and I think we really could be at home. He is just being monitored frequently for blood levels and vital signs...all of which are decent to good. There has not been any vomiting since the initial incident which is great, but he isn't his usual energetic self. He is still on a clear liquid diet and seems to be losing some weight (who wouldn't?) and that may account for some of the lack of energy.
Tomorrow they plan to do the endoscopy unless something indicates a problem before then in which they would do it today. The reason they aren't just doing it today has nothing to do with Nicholas, but more with the availability of the attending GI specialist. He wants to do this since it is really imperative that nothing gets stirred up or scraped (that would cause bleeding) and feels no one is more qualified than him.
Meanwhile we are watching the snow fall and watching cartoons. I rely on my laptop for entertainment when I am not having to sneak a meal in the bathroom. Enjoy your day.

Saturday January 24 - Delayed Intensification - Day 11

Nicholas was rushed to the hospital today after vomiting a large amount of blood. Don't confuse this with blood in his vomit, this was vomiting total blood. They didn't have any rooms in the pediatric ward, so we had to go to the emergency room where his doctor was waiting for him. Although his blood counts were good yesterday, today they came crashing down. Vomiting blood could have contributed to this, but is also a side effect to the chemo. His blood pressure was extremely low and they are worried about additional bleeding into the stomach. As you know from earlier posts, he took a chemo last week that limited his ability to clot, so either he got an ulcer or other lining damage from the steriods or a tear in the digestive track from unknown causes, but the body wasn't able to repair itself and allowed too much bleeding. Fortunately he only had the one bought of vomiting and hasn't had another occurence in over 10 hours. They aren't convinced the bleeding has stopped, but feel confident that if it hasn't, at least it is a slow bleed. He was given plasma and blood as well as fluids and his blood pressure seemed to be heading in the right direction. We then met with the resident GI specialist who is monitoring his condition through the night. If there is additional vomitting, they will do an emergency endoscopy to determine what is happening in there and try to make repairs, but if all is well he should be able to come home tomorrow. In any event, the doctor is insisting on an endoscopy before Wednesday when he is otherwise scheduled to get back on the steriods. Assuming all goes well, I imagine we'll schedule this on Monday. The plan now is to keep him off food and drink for a while and let the stomach heal at bit and get him on a stronger stomach coat like Nexim(??) for this next dose of steriods. Please continue to pray for him. We knew this was going to be a tough time, but vomitting blood was not an option we prepard for

Sunday January 18 - Delayed Intensification - Day 5

"5 whole days under our belt!" That is how we re trying to cope with this phase. With each day that we get through, we are that much closer to being done with this phase. It sounds way better than realizing that we still have 51 more days of intense therapy.

Nicholas has been doing well and went back yesterday for another treatment. His doctor would like to have seen him tomorrow or tuesday, but due to the inaugaration, the roads to the hospital are closed. We will go on Wednesday (even then the roads may still be closed - according to the road signs I saw on my way there this week), but the show must go on. The treatment he got yesterday decreases ones ability to clot, so we have to keep a good eye on him and make sure doesn't hurt himself. We are hoping he doesn't get hurt or get sick as we don't know how we'd get in for treatment. He is a bit cranky, because he is back on the steroids. This make it hard on everyone, but we are happy to see him otherwise pretty active.

Thanks to everyone who has been making dinners. We are eating like kings and it makes a huge difference in my day.

Wed Jan 14 - Delayed Intensification - Day 1

Today Nicholas starts his fourth and toughest phase of treatment called Delayed Intensification. We are off to the hospital for an EKG (chemo can damage your heart), a bone morrow biospy (his doctor does this at every phase to ensure that there is still no sign of leukemia), a two doses of pushed chemo and a chemo treatment to the spine...talk about a tough day for my little boy!

I remind myself that it is only an 8 week phase and the light at the end of the tunnel is that we move on to a maintenance phase where most of the medications are administered at home with monthly low dose chemos at the clinic.

Nicholas has still been full of energy and you wouldn't recognize him as being sick. For this we are very grateful (not to mention tired from chasing him around so much). We know that this will change in the next days or weeks, but that it is temporary. Maybe we will use this time to catch up on our rest!

Please say an extra prayer for him during this time. He is a tough little guy, but every bit helps. I hope you are well and remember...enjoy your kids....