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.