Patience

Many people have been asking us about Trenton lately, so I thought I should post a quick update. Although there's really nothing to update! He had that bad week of bloody noses, but has not really had any problems since. He's been feeling good and just being his usual rambunctious self!

His doctor finally called us back after talking to several other doctors around the country about treatment options. None of them have used this other chemo-like drug on anyone under the age of 5, so we will NOT be doing that. She also said National Jewish just finished a huge ITP study, so we'll see what comes of that in the next few months.

Until then, we continue to wait. Since Trenton is feeling well and not having any adverse reactions at the moment, we will continue to sit on this.

He is getting funnier and more talkative and more wild every day. Here's just a few quick pics from the recent 3rd church retreat in Estes Park, and playing in the fountains at Southlands.

Bloody Tuesday

Maybe some of you are thinking, what does this disorder really do to Trenton other than he bruises easier? Big deal! Well, let me tell you.

I was about one second from falling asleep last night when I hear "owie...owie" Not really a painful cry, more of a matter of fact kind of statement, with some curiosity. Crap, I know that means he sees blood. So I go in his room and Trenton is absolutely covered in blood. His nose had probably been bleeding for about a half hour. It's on his face, jammies, blanket, pipe, and his sheets are drenched. The poor kid just looks at you like, what is going on?!

So Tyler and I begin to change sheets and wipe new blood and crusty blood, etc. We call the Children's Hematology direct line (which is kind of your prize for being a patient there), and the doctor gives us instructions. We have a medicine that we've used for his mouth, which they say to give him. Then Tyler runs to the drug store to get some nasal decongestant spray (not sure why that works), and more Kleenex since we are quickly running out.

Meanwhile, Trenton is more hyper than any 19 month old should be at midnight. He just thinks were having a pajama party! Except for the constant nose wiping, he's having a great time. Although he does catch glimpses of all the blood and gets concerned, but quickly gets over it.

Anyway, the bleeding finally stops around 12:30 and Trenton is in bed with us as we try to get him to calm down a little bit. He does eventually, and its back to bed for all of us.

This morning, I noticed he did bleed a little more and his poor little nose is just a crusty blood mess. He really hates that. But he's otherwise good! I think the worst part for him was me not giving him his pipe back since it was in the laundry (it's attached to a blanket). So luckily I don't think he'll be too traumatized.

Worse but unaware

So, not such great news today. Trenton's platelet count has gone back down to 6,000. At this point, we'll probably wait a little more, and maybe try doing IVIG (an IV infusion) and/or Prednisone again. We've done both of these with no inprovement, but Dr. Hays says that sometimes it works a little better when the person is more chronic, which is what Trenton is starting to be.

Hays also said she could put us in touch with another parent who has an eight-year old girl, who's had ITP since she was 6 months old, and still has very low counts. At first, I think, great, someone else who's going through this! But then, that also scares the crap out of me. You mean, this could go on for 6 MORE YEARS?!

We will not be doing that nasty chemo-like drug. The doctor hasn't used it on anyone under the age of 5 before, and is very hesitant about that. She's going to be talking to another ITP doctor in New York and ask some questions. Then she'll call us next week with the plan.

So, we wait some more. Hays even thought Trenton has looked better than she's ever seen him. The nurse also told us that when Hays saw Trenton on her schedule for today, she got so excited. Gotta love that.

So, having taken the day off for this appointment, I thought I would take Trenton to the zoo. But, the zoo sucks in the rain. So we went to the Children's Museum instead, which was super cool. Trenton was a little nervous about it at first, and just kept standing there and watching everyone, but eventually got used to the idea :)

As Papa says, someone should tell this kid that he's sick, cause he certainly doesn't seem to know it!

almost there

So the big day is tomorrow. I am so anxious to see what Trenton's counts are. He's been looking pretty good lately, so we are just very hopeful. Someone asked me the other day what I would like his counts to be. I think I keep hoping for 50,000 since that's the magical number for not wearing the helmet (not that we've been that good about it anyways). But I think anything higher than what he's had would make me happy.

We go in at 9:00am tomorrow, we'll keep everyone posted!