April 30, 2009 - Maintenance..Day ????

Nicholas is full of energy and gets smarter and trickier by the day. We have trouble keeping up with him. For that we remember to stop and thank God for, but at the end of the day we are exhausted. We remind ourselves that this is way better than the alternative and better than we could have imagined. We took him fishing with the other kids on Sunday and he had a blast. Below are a few of the pictures:

Can you tell what is different about the above picture?

With his little spongebob fishing pole, Nicholas caught the most fish. I guess he moves sporadically enough to make the bait look appetizing. He had a blast. Nicholas wants to be outside 24/7. He is such a boy..climbing everything and getting into evertyhing. There is no lying around inside in front of the TV for us.

April 2009

Once again, I have been neglectful in my posting about Nicholas. But, rest assured, that means things are going well. It means that we are home and not around nurses and doctors who can take care of him while I post. We are in our 2nd cycle of the first round of maintenance (cycle is 4 weeks and a round is 3 cycles or 12 weeks - This will repeat until Nov 2011). He should tolerate this very well - compared to what we have already been through, it is almost as if we are done treatment. Typically we only go to the clinic every two weeks, but last week we were there every other day. Nicholas's ANC number was low (ANC is a measurement of how well your body can fight infection) and his medication needed adjustment to bring this back up. He wasn't sick or anything, but you don't want this ANC number to be too low in case you should get something...such as swine flu. They were going to switch his broviac (tubes that go into his body so he doesn't constantly have to be pricked) to a port (a central ine that that goes under the skin and will allow swimming and tubs) last monday, but that got scrapped when his medications needed adjusting and so much lab work to see where he was with things. So this will probably get rescheduled for June 1 when he is due for his quarterly spinal treatment. At least that is early summer and should be good by real swimming time (although some neighbors already have their pools up and going). This was disappointing as dressing changes are not a pleasant time in this house. He can't stand it and I look forward to not having to flush the tubes on a daily basis either.

February 19, Day 37 - Delayed Intensification

Wanted to report that we are only three weeks away from maintenance and Nicholas is doing great. I have a few more chemos to give here at home and a few pills until Tuesday, but then he has two weeks drug free to regain his strength. Based on the way he is screaming out the window as Hailey leaves for basketball, you wouldn't think he needed to regain any strength, but I think these last doses build up and take you down quick. We could still have a hospital stay due to fever, but it feels good be ticking off the days.

As I mentioned before, he has lost most of his hair. But we are used to it now, so it isn't as shocking as we had thought it would be. I am sure if you are seeing it now, you are shocked by it but for us, we saw it happen gradually. Should help with our Rely for Life requests don't ya think?

His cute smile and bright eyes shine though and with him having the energy to play with the kids, ride his heep, etc, makes it seem okay.

We are back to the clinic tomorrow and they anticipate him needing a blood transfusion, so it will be a long visit, but usually you see improvement after getting blood, so it is worth it. I can't stress enough the importance of donating blood. From this experience, I plan to do it as often as possible and encourage you to do the same. When you see how a pint of blood or its parts can turn things around, you know why they call it the gift of life.

Thursday February 12, 2009 - Delayed Intensification - Day 30

Wow! Day 30 already - how cool is that? Nicholas stayed overnight at Georgetown and received a spinal treatment, and two other new chemos. The overnight was just to keep him hydrated as one of those chemos can do damage to the kidney and liver. We should be out of here soon. This was our last scheduled stay! Whew-Hew! Of course, I can't fool myself into thinking this is our last stay, but it is nice to have this one out of the way. We were really dreading it.

Since Friday, Nicholas has lost pretty much all of his hair. It wasn't as bad as I envisioned it being, but I am sure that anyone who sees him will see it as quite a shock. We were able to watch it happen each day and although it is sad to see, it isn't horrible. His cute smile still shines through.

We did just realize that although this phase has just under 4 weeks left, he really only has treatment for the next two weeks and the last two weeks you just ride the wave and have recovery time. And of those two weeks, the last four days are only taking a low does pill at home. So what that boils down to is that he receives his last big stuff next Saturday - that is only in a week or so! This is big news! Maintenance is just around the corner. This really puts a skip in our step.

February 6, 2009 - Nicholas' 3rd Birthday

Today really was a great day. Nicholas didn't have to go to clinic and he didn't have any medications to take. Although it worked out to be a birthday gift, it was total coincidence. He enjoyed his day and we got some great pictures that don't at all show it as a "sad time". For this I am truly thankful.

Later that night he did start losing a massive amount of his hair. It is kind of like a petting a dog or a cat and a few strands just stick to your fingers or rub off on your clothes - not huge clumps. He likes looking at himself in the mirror though as he sees a somebody different, but he knows it is him . We told him that he is getting his big boy hair now that he is three. It should start coming back in a month or so. Maybe we'll even get some good Easter pictures. None-the-less, today was a good day and you can see it in his face.

February 1 - Delayed Intensification - Day 19

We came home after receiving a treatment on Wednesday. Nicholas was so excited not to be tethered to the IV machine. He was literally running the halls. It was very cute. The next day, was the first time we saw him showing any signs of being tired and it was pure exhaustion. This is the timne we can say that all the treatments have finally caught up with him. It was hard to see, but expected. We know that this is the toughest phase and with each day we get through, we are one day closer to maintenance. We went back to the clinic on Friday andI somewhat expected to get readmitted. He was totally zonked. The doctor thought for sure he was going to need blood and I thought the same, but his labs came back good - way better than when we left on Wednesday even. So even though I was hoping for something that would give him some kind of boost, it was reassuring to know that he was just tired and his body was really fighting back. He perked up friday afternoon through now, but definitely not at the same level he was just last week. It is okay though as we are just kind of staying warm in front of the TV anyway. I just wish he would eat more. He lost 3 pounds while in the hospital and when you only weighed 28 pounds to begin with, that is a lot. I don't like feeling the bones...he asks for everything, but only picks. He is back on the steriods which should make him eat more, but hasn't really taken effect yet.

We go back tomorrow and again on Wednesday for a lab check. Maybe on Friday too (based on Monday and Wednesday's results), but will not have another treatment until Feb 11. This will give him a chance to get ahead again. But, the Feb 11th treatment is a big on that will require at least an overnight hospital stay. The drug he gets that day will make him lose all of his hair, so all those hats will be put to good use! The date could be pushed back though (they kind of expect it to) due to not making counts.

Please continue your prayers. We feel them and appreciate them.

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....