Waiting for warmer weather

Trenton saw his doctor again today. Tyler and I were really thinking that his count had gone up. He doesn't have as much bruising as he did last week, and his eye is looking better already (still pretty nasty, but better). So we were kind of surprised to find out that they are still at 8,000. We did learn one interesting thing, that he will bruise more easily in warm weather, something about circulation. Weird though, huh? So when he wears shorts in the summer, that's when he'll look the most beat up. Great!

The doctor is afraid he is becoming more chronic, because other coagulating functions of his blood are rising. But she's still hopeful that he will get better on his own.

The next drug to try is Rituxan, which is normally used for a type of lymphoma. Here I go with my limited medical knowledge: this drug is supposed to reduce the number of B cells he has, which would in turn decrease the number of antibodies there are that are killing off his platelets. But this would also very much compromise his immune system, so the doctor doesn't want to give it to him in the winter when he's much more susceptible to all kinds of other infections (especially being in day care every day). The side effects are things like nausea, headaches, fever, etc. No fun. Also, this drug has only been being used for about 5 years, so the doctors aren't in any rush to give it to him, since they don't know the long term side effects.

So, we are going to wait and see the doctor again in two months (unless needed sooner), and will get his blood checked periodically in there. If his counts are still low in two months, we'll probably do the Rituxan. But we are still hopeful that he will miraculously get back to normal on his own. We have his little red and white "stuffed" blood cells by his crib, wishing him the best.

Black Eye (PG-13)

I hesitate to show this, but it gives you a good idea of what a normal fall looks like on an ITP kid. Trenton tripped yesterday at school and hit the corner of a bookcase. He was wearing his helmet, but maybe he needs to live in a bubble. The first two pictures are from yesterday afternoon, and the third from this morning. (and these ARE Tyler Jones Photography worthy, mostly because they were taken by Tyler)

Again, he's still happy as can be!

I bought him a t-shirt that says "you should see the other guy." I think that would be appropriate to wear for a while

Random Update

I don't really have any new information, but I thought I would tell everyone that! We see the doctor on Monday and will hopefully then figure out what to do from here. We know his count continues to be low because the poor kid is just covered in bruises, especially on his legs. We brought him to the zoo and he wore shorts since it was so nice. He gots lots of looks, and I figured he must look super cute today! Then I remembered what his legs must look like to strangers. Oh well, he still looked super cute!!

Trenton hasn't really been feeling top notch lately. We think he's just got some bug, which normally we wouldn't worry too much about, but I think we are just on this heightened alert. He started to get these blood blisters in his mouth (which he had tons of before we were put into the hospital), so we started him on this medication that helped last time. But it can make him nauseous, and he threw up later. Tyler wanted to stay home on his birthday, and he got his wish! But I don't think he wanted to spend it cleaning up vomit. He's such a great daddy.

Our doctor was concerned when Trenton had a high fever and if he might have some kind of infection, but the fever slowly died down. Now he's just got some other junk that obviously is making him feel terrible. It would be nice if it was just the medicine, since we are done with it now. And the blisters are gone which is great.

Anyway, I thought I would share some pictures too. The Middle School Youth Group girls at church made Trenton the cutest blanket, and he just loves throwing it around and playing with it, so I just had to take some quick pictures with my phone (it's really not Tyler Jones Photography worthy or anything):

(he's actually in there somewhere hiding)

Thanks girls!!

8

Trenton got his blood check again today. And again, he didn't even flinch. He was more excited about the puppy sticker on the chair. (and yes, he can even say "puppy!"). We decided not to wait around this time, and the nurse said she would call me with the results. We didn't even make it home before they called. I could tell right away by the tone of her voice that it wasn't good news. His count is still only 8,000. You may be thinking that it's increased, but really not. The doctor told us once that anything below 10,000 is pretty much the same.

I think I'm not as emotional after this one, because I was expecting it. Tyler thought the same thing, that last time we had some hope. But I've noticed more bruising this week, and he has the petechiae (the little red dots) all over his arm today, so I knew it was going to be low. So the doctor wants us to come in again in two weeks. We are afraid they will just want to wait, but they seem to change their minds on things after they have their team meetings, so we'll just to see what they say, and trust their expertise.

But thankfully, Trenton continues to feel well and really shows no side effects at all. He loves his helmet and has gotten pretty good at getting it on himself even. If only I could teach him to snap the button, we'd be good to go!

Pictures

Sorry for the last entry. Can you tell I was a little upset? I thought I should have a more uplifting note today.

So this morning, Trenton was playing with this basket of toys quietly, and when I looked around the corner, this is what I saw (oh, and many of you wanted to see his helmet that we have this love/hate relationship with, so here you go):

Crap

Trenton got his blood checked today to see if the WinRho started working yet. He was such a trooper, especially when we have Irene taking his blood, he doesn't even seem to notice. I ran into our doctor in the hallway and she said she would run down to the lab herself to get the results and then let us know (after she got a smile from Trenton).

So we hung out a little bit, roaming the halls, until a nurse came to tell us that his count hasn't changed at all. It's still at 5,000. This is extremely disappointing to say the least. She did say it peaks around day 7 or 8, so we will come back on Monday to check it again.

I was near tears on the way out, and then saw our favorite nurse. I think that's when I started to lose it. She is so sweet with Trenton and tried to get him to laugh. I just can't get over the staff at Children's. We couldn't be happier with everyone there. (Well, unless they could cure him of course). Once I got to the privacy of my car, I really lost it. The poor lady at the booth when you leave the parking garage, but I'm sure she's used to emotional parents. Later, I texted the family to give them the news. I think mom puts it best with her response of "crap." That pretty much sums it up!

New Drugs

Trenton (and I) got through another treatment today. They checked his platelet count first just in case it was above 20,000. But of course it wasn't. He was only at 5,000 so they went ahead with the WinRho. It took about 45 minutes to get "ready," so Trenton hung out in the play area meeting other friends and played with this cool car. The infusion took about all of a half hour, which was great. He sat on my lap the whole time, mostly eating, but also watching Animal Planet and talking to whomever would make eye contact with him. We had an awesome nurse who just kept playing with him, making faces, etc. He was just giggling at her, it was really cute.

Then we had to hang out for a half hour to make sure he didn't have any reactions. He was running around the place like a mad man, so he obviously felt fine. We had to check his vitals, and the nurse let him hit the "start" button on the machine, and let him check his own, and my, and her temperature with the ear thing, so I think he's in love with her now. Then she took out his IV and we were sent home. They said he could get stomach cramps, and feel achy or kind of flu-like. But so far, so good! Although now he's trying really hard NOT to nap. But hopefully he will continue to feel good.

We will go back on Wednesday to get his count again, and make sure he isn't turning yellow. If he does, he will have to get some other medicine. So please pray he stays pink! Now the doctor said she would be happy with 11,000, so that's what we're shooting for!

Lows and Highs

So Trenton's platelet count is down to 5,000 again. Tyler and I both knew it would be low, based on more bruising and stuff. But I think I was just hoping that I would be surprised. No such luck. We do get to wean him off the Prednisone though, being done with it within the week. Maybe I can sleep in past 5:30am, that would be cool.

We have another appointment for next Monday to go in again, this time for another treatment. We aren't going to do the IVIG that we did while in the hospital, since it didn't work at all. We are trying another drug called WinRho. I guess it's kind of the same thing, but not. Does that help everyone? Yea, me either. It is an IV thing, but it can still be done at the clinic, which is nice. There aren't too many bad side effects, but he could feel nauseous, and achy, so please pray that he handles it all ok.

If that doesn't work, we may just be told to wait a bit (a bit being months). The doctor still doesn't want to do the harsher chemo drugs, since they don't really know the effects of what it could do in ten years. And she said she's responsible for him for the next 100 years, so she really doesn't want to do that to him. So we really hope this does something to his count. We are sick of waiting, sick of bruises, sick of his helmet, and sick of not seeing his precious blonde toe head!

On a lighter note, I ordered Chili's-to-go for dinner tonight with a gift card I got (thanks boss), and I set Trenton down on a bar chair for a second to sign the receipt. Then I start to hear this crunching. I quick look, and Trenton totally stole a chip from this other guy's plate! Luckily, the guy was cool about it and just laughed, saying that of course he should take a chip, everyone else had some! I felt like such a dork, but still laughed the whole way home. It was a great release from the stress of the day.