Love/Hate

Trenton's count last week was 74,000. I'm probably not as excited as I should be. He's been looking really good lately, so I was totally preparing to hear a much higher number, maybe even something in the 100's. But, 74 is good. I keep telling myself that.

Tyler keeps reminding me that it's hard to compare when we are only doing checks every other month or so. He could be at a low point right now, and is heading up again. I sort of wish there was a machine that existed that I could check Trenton's blood myself at home, like a blood sugar test. Tyler thinks Trenton's finger would be poked raw from me doing it every day. He's probably right. It's just so hard not knowing what's going on inside your kid's body!

In the closet the other day, I found the helmet Trenton had to wear when when his counts were so low. I had a love/hate relationship with that thing. Looking at it brings back the memories of when this all started, two years ago this month. I looked back at the pictures of his little body just covered in bruises, and another where one entire side of his face was black and blue. It seems like an eternity ago. I debated holding on to the helmet as a memento. Is that morbid? Or is it a sign of how precious life is and how amazing it is that Trenton is well?

I did give it to our nurse last week, thinking another family could benefit from it. But kind of hoping no one will ever need it. But someone will, and I pray that God keeps them as safe as he has Trenton.

(Trenton saying goodbye to the now too-small helmet)

Overdue Update

I was given grief today by an unnamed person, whom I will just call "dad," that I haven't posted anything in a while. So, here we go!

Things have been going pretty smoothly lately. About a month ago, I noticed a lot of the tiny red bumps on his belly, which is usually a sure sign of a low platelet count. I e-mailed our doctor to see what he wanted to do, and of course ordered the usual blood test.

I was really preparing myself to hear a low number so was again pleasantly surprised to hear he was at 103,000! I was really in shock and extremely grateful.

Trenton's been doing just fine, as he always appears to be, so we will just continue hoping that he grows out of this obnoxious disease. In the meantime, we continue to watch for signs, worry any time he bonks his head, and pray.

Blah

Trenton's blood count today was 42,000. I wasn't really surprised as I was starting to see signs a few weeks ago. So his numbers were probably even lower before, and now hopefully on their way up again.

But the doctor is starting to look concerned. He usually just jumps right into his usual schpeel (not sure how to spell that) of "let's keep sitting on it!" But he didn't really have that today. He was starting to bring up the next option, a chemo-like drug called Rituximab. It's typically used to help treat lymphoma, leukemia, etc. It's not supposed to have the super bad side effects that regular chemo does, but could still make him feel yuck. It's just scary to think about all the trips and IV's and sitting around in the clinic, etc. But, we aren't totally there yet. Apparently it's crazy expensive, so insurance companies aren't super willing to see it as necessary.

So the doctor said to call him the next time we can tell his counts are lower, and get him tested, to help his case that he really needs this. Then we'll decide what to do.

It's hard because you want to do anything possible, but you also want to protect your child from anything that will hurt him! So please pray that we have the wisdom to know what to do. Or just that his counts sky rocket and stay there. That would be much easier.

Not out of the wood yet

I never did hear back from our nurse about what she thought about Trenton being on steroids when he was last checked. So I just e-mailed the doctor and he replied right away, even while he was on vacation! So we brought him in last Friday to get his blood checked and have a quick visit.

Just when we thought this whole ordeal might be coming to an end, Trenton is back down to 54,000. He still looks good (for a crazy 2-yr old boy), and the doctor said he should, since 50,000 is kind of the magic number. Again, we will wait and hope that he continues to improve. We are getting pretty good at waiting.

The good/interesting thing is that all the dips he's been having, have continued to be higher and higher. You can see the chart at the top if you are more of a visual person. It helps me stays positive :)

Cautiously shocked

I'll start with a little background. Pretty much every spring Trenton gets a cough, or RSV, or brochciolitis or some other crappy lung thing. It happened this week...again. So, the nebulizer (or "the machine", a nickname I stole from my asthmatic brothers) came back to life and Trenton was put on a low dose of Prednisone for a few days. 2-year-olds on steroids can be a very scary thing.

When we first found out about Trenton's low platelet count, he was put on Prednisone. I guess it's the first line of attack. It didn't work. They tried it again later, it didn't work.

So, why am I telling you this? Because we got Trenton's blood checked today and I received a voice mail (which will probably remain on my phone for a while) that said Trenton's count is at 157,000.

Aaaaaahhh!

My parents say we should celebrate, but I'm still nervous. I'm nervous that when we stop the Prednisone tomorrow, the count will plummet again. Am I being a pessimist of a realist? Either way, he's at 157,000! I may let Trenton run around today without me running behind him with reached-out arms waiting for him to fall. I may release him from his plastic bubble!

The hematology doctor thinks we can wait a few months to get him checked again. He doesn't know about the Prednisone. I'm waiting to hear back from my nurse to see if she thinks it could have made that big a difference. Hearing what she says I think will make me either continue to cautiously celebrate, or really take a big sigh of relief that this freaky thing may be coming to a close. I just hope she calls soon.

Again, I can't thank everyone enough. I know people continue to pray all the time. I was just told a little friend of Trenton's still continues to pray for him in class, which almost made me cry! Obviously God cannot ignore that.

Stay tuned for the nurses' verdict...

Good news and bad news

I'll start with the good news...Trenton got his platelet count a week earlier than expected, and they were almost doubled at 63,000! The bad news is WHY he got them checked early.

The craziness started late Saturday morning when Trenton was playing on our bed. Tyler just got done telling him to stop jumping, and I was cleaning the floors next to the bed. The I hear a loud thump and see Trenton on the floor next to me, whacking the back of his head. I grab him and he's freaking out. As I start to walk him to his room, he's doing the sucking in thing and I'm just waiting for the wail to come out, but I don't hear it. He goes totally limp in my arms, passing out. I start screaming for Tyler, and hand Trenton to him. As I'm trying to figure out how to use a phone, and remember the number for 911, I'm thinking my son is paralyzed or dead, but then he's starts crying. He was probably only out for about 5 seconds, but it felt like an eternity. Worst...feeling...ever. I was just completely shaking and freaking out. Tyler actually did really well! It's a good thing that at least one of us can have a level head at certain moments.

Trenton is crying pretty good, but we decide to just call the doctor. Tyler talks to them while Trenton and I cuddle on the bed. He seems to be in pain, and kind of out of it, but doing OK. The doctor says just to watch him, but to bring him in right away if he throws up or acts really lethargic.

So we continue cuddling, Tyler goes to grab some Tylenol (thinking he must have a massive headache) and he just starts screaming again, then he throws up. Off to the ER! I realized it's hard to change clothes while shaking!

At Children's, the doctors and nurses are great, and very quick. After checking him out and talking to the hematologist, they decide to do a head CT since his counts were so low, and they would just feel better if they could rule out a brain bleed. Normally, they probably would have just watched him for a couple hours, but ITP butted it's way in again.

The CT was pretty rough, having Trenton squished into this little head thing, just screaming. But he eventually gave in and did really well. Tyler did great too, having to hold his hands and try to soothe him. While waiting for the results, they decide to get his counts checked while we're there, so they have an idea of where he is now. They were worried it was pretty low, since his belly is covered in petechiae.

The rest of the time was good news. The doctor told us that the scan looked great, and his counts were even up! She said he probably just has a concussion and to watch him really close the next couple days. Oh, and to take it easy. Yea, two-year-olds don't understand what that means. Trenton was already doing better, happy as usual, and ready to run.

I did have to wake him up during the night, to make sure that he would wake up. He just kind of looked at me, like "what the crap are you doing to me?" I took that as a good sign.

He did great the rest of the day, and had a blast today with all his cousins. You would never have guessed he had a concussion the day before. It's amazing how quickly they can recover.

I really felt like Trenton was covered in prayers. The word spread quickly, and I just feel like everyone is so concerned about him and loves him. It's nice to know he (and we) are so supported, and that God continues to take care of our little crazy man.

Hopefully the next count is done as just routine!

Nearly perfect

I took the day off today to take Trenton to Children's for lab work and see the doctor. His last count was 81,000 so I had dreams of him hitting 100,000. I had a plan if he did. I was going to surprise people with the number. Go to Papa's office and put a sticky note on Pastor Sam's door next to all the other notes. Then we'd go surprise daddy at work. Post it all over the internet, send texts.

Yea, that didn't happen. The doctor came in and told us that he dropped down to 34,000. He was so sweet and just kept saying how sorry he was. He still is holding on to the hope that Trenton will get better on his own, and does not want to do any treatments right now. He said if he dips to 10,000 we'll have that conversation. He knows how hard this is, and says this is the crappy part of this disease, that it's so up and down. He also said he was so hoping to see him hit 100.

I left the office feeling pretty defeated. I tried to prepare myself a little bit, because we saw signs of it dipping. But I secretly thought that if I'm prepared to hear a low number, I'll be that much more surprised when it's super high! It's weird how our minds work.

But, we still had all day to hang out, so we took advantage of the awesome weather. We went to the zoo for a little while, then went downtown to have lunch with Tyler. When we got back home, we both took naps, then we went for a long walk with the dog. Followed by leaf raking and chalk drawing. Could have been a really awesome day if the number 34 didn't keep coming into my head.

I'm trying really hard not to feel sorry for myself, or for our family. There are so many worse things that could happen, and we are certainly reminded of that when we are at Children's and see all the other kids going through chemo. And I was reading this other family's blog about their little girl losing her battle with cancer. I still have my son, he's thriving, he doesn't know he's sick. I'm just so sick of it! I just keep praying for the day I can surprise everyone with the news. I'll keep planning.

All things potty

Lately I feel like my life is revolving around the toilet. No, I'm not sick, we are in the throws of potty training. But I'm really not complaining because it's been a while since I've had to change a dirty diaper. I know everyone says this is so hard. I think we lucked out! About a week or so ago, this little toilet shaped light bulb must have gone off in Trenton's head because he decided he wants to go on the potty all the time. He has been going a little bit for a few weeks, but would never tell me BEFORE he had to go. But he's done so well! And he loves picking out his underwear every morning. We just got him a bunch of new ones with Disney characters. Last night he actually woke up yelling "Goofy!" I hope it was a good dream and Goofy wasn't picking on him or something!

Anyway, sorry for the potty talk. But that's been our life. Trenton continues to do well. I have noticed a few more bruises and things, but sometimes I think I'm just psyching myself out. We get him checked on Friday, so I'm really anxious to see the results. Last time they went this high, we were crushed by a huge drop. So I'll be very happy if it's anything higher than 81,000.

I just can't wait until I don't have this lingering fear following me all the time. When I don't worry about every bump and bruise, or have to inspect every owie thinking it could turn into something worse. Or does every parent do that?

So stay tuned on Friday, I try to post the results as soon as I can. I am taking Friday off though to take Trenton to the clinic. Then I think we'll goof off a bit. Hopefully with a celebratory lunch!

81!

81,000! Need I say more?

I got to talk to the doctor today, briefly (it's a long story why only for a short time). He was very excited and thought Trenton looked great. He said he wants to continue checking counts, and just waiting. He doesn't want to do anything unless Trenton dips below 10,000 which hasn't happened in a while. So we will wait about 6 weeks and check him again. I'm keeping my fingers crossed for over 100,000!

I was very happy when we were leaving the hospital, but I was quickly reminded how fragile life is. Trenton and I were walking behind this couple on our way to the car. I have to admit I was getting a little annoyed by how slow they were going. As Trenton and I passed them, I noticed her giant pregnant belly. Oh fine, I guess she's allowed to walk (waddle) slow. When they got to their car, the man grabbed her and gave her the biggest hug. They stood there for a while, the woman just melted into the hug. I can't imagine what news they might have just heard about their little unborn baby, but it must have sucked. I almost started crying for them, and have been thinking about them ever since. I can only hope and pray they be comforted and God will take care of their little one like he has mine.

Prayers

Trenton has an appointment this afternoon to get a blood test. He's been looking pretty good, so please pray hard that his numbers are outstanding!

I'll post the results as soon as I can.

No news

I have no news! Just thought I would say that. It's been about 5 weeks since we've gotten Trenton's blood count. I can tell when it's time to get him checked again because everyone I know is asking how his counts are. Which is amazing on it's own! I still continually get people telling me they are thinking about Trenton and praying for him. How cool is that??

I did just e-mail the doctor to see what he's thinking. I feel like I'm being a pest, but I'm afraid they've kind of forgotten about him. Again, I know he's not deathly ill, but he's the cutest, sweetest little guy in the world, so you'd think they should all care about him as much as I do, right?!

I'll keep you all posted!

And I shouldn't say we have NO news, we do have a new nephew! Isaac deRidder was born yesterday. He's super cute (duh) and he and Chris are doing very well. Trenton thought he was pretty cool, and just kept staring at him. He just loves all his cousins, which is so fun.

Also, we recently took a quick trip to Telluride. Here's just two of my favorite pictures: