Good Times

What a great week so far...and it's only Monday!

Trenton's count is at 56,000. I was quite surprised by this as I knew he took a dip a few weeks ago. So hopefully that means he jumped right back up, and will continue to climb.

After going to Children's this morning, we got to go to the zoo with a bunch of cousins! Rick and Sara are in town, so I've taken most the week off work. Trenton has been so excited to just hang out with the family.

A few of the highlights so far:

Sorry Dad

Sorry, I was getting grief for not posting in a while. But there hasn't been a whole lot to report. I realized it's been a while since Trenton got his blood count, so I brought him into Children's last week to get checked. We had to wait an exceptionally long time for some reason, but luckily they have lots of great toys and they brought out the little plastic car again. Otherwise, I don't think we would have made it.

Anyway, he got his blood work done and he's up to 45,000! Not too shabby. I really thought (and of course, hoped) that it would be much higher. He doesn't have a lot of bruising and the petechiae are gone. But it's still up, and I'm very happy about that. Or at least that's what I keep telling myself.

I finally convinced Tyler to take some pictures of our OWN kid, and the wait was certainly worth it. Here's our little monkey:

Surprising

Trenton's count is at 36,000 today. I was expecting a lot worse! He's been pretty bruised lately, and has had a lot of petechiae on his stomach, so I was really waiting to hear some pretty low numbers. Being sick can also lower his counts, so I was worried this last cold he had may have hurt him too. But he's hanging in there!

Tyler and I just got back from Texas last night, so Trenton was able to stay with Papa and Grandma DeRidder for a few days. He seemed to have had a blast. I can't show any pictures because the only one's I received he was naked!

As soon as Tyler is done with some wedding photos, I'll start pressuring him to take Trenton's 2 year pictures. So I'll be sure to post those :)

Reflections

It's so weird to think that two years ago today we were in the labor and delivery room at St. Joe's, actually getting induced at about this time. The little bugger's heart rate would drop after contractions, so the docs wanted him out a little quicker.

Early the next morning we were introduced to this tiny little red-headed thing that has since stolen my heart. It's certainly been an adventurous two years! It's also hard to believe that we've been dealing with this crazy disorder for almost a year (in December).

I also found out today that my cousin had the same illness when she was little. I heard some talk of that, but my mom confirmed it while visiting my aunt and uncle in Michigan. Strange. She had to have her spleen removed when she was four, but I'm trying not to think that far ahead yet.

We will do blood work next week. I told the scheduler I'm not in any big hurry, because I'm afraid to hear the numbers. Trenton looks pretty badly bruised lately, and has the spots all over his belly, so I'm not real optimistic.

Nonetheless, Trenton continues to amaze me every day. He finally learned to say his favorite neighbor's name, can jump like a pro, and Tyler swears he changes the TV channel to cartoons while he's getting ready in the morning.

Happy Birthday buddy! (maybe wish for some platelets when you blow out your candles tomorrow!)

Down

I had to take Trenton to the doctor yesterday for an ear infection, so had them check his blood count since we were already there. I usually go to Children's, and I was reminded why! They really are super sweet, but can seriously not do kid's blood draws nearly as well as the Children's nurses. But, he got through it. He kind of started to help the two nurses it apparently required, so they were pretty impressed. They think he should be a doctor.

Anyway, they called today to let me know that it is only at 29,000. Tyler's trying to convince me that it's still higher than it has been, and is still optimistic about it continuing to climb. I figure one of us can be a stressful mess, and the other the level-headed one. That seems to work well for us.

Rising again

Trenton is at 59,000 today! He was, once again, so brave! Tyler and I are happy, but trying not to get too excited. He definitely looks a lot better lately, and continues to have an abundance of energy.

I took this picture this afternoon to show just what a happy little man he is. He's really starting to like the dog too.

Thanks again to all of you for your constant support, cards, help, etc. We continue to feel extremely loved and cared for!

Holding Steady

Trenton's latest count was 25,000. Just a slight dip, but still the wrong direction! Our doctor still wants to hold off on doing the next treatment. He keeps saying that when kids start to get better, it can go up and down like this.

We did get a little into what the treatment would be like, and it sounds a tad nastier than we've heard before. But he cut off the questions and said, "we're not there yet." He's still very sweet and I'm really glad we made the switch.

Trenton is so good when we are there, the doctors just laugh. They always feel his belly to feel for the spleen, and he just pulls up his shirt and giggles. When we get his blood taken, he usually sits on my lap to do it. But Friday, he just got up right there on his own. I asked him if he wanted to just sit by himself, and he said "yea!" Which he did! He just sticks his little finger out and watches the blood drip. He certainly does not get this trait from his father! (who can't even watch ER without getting nauseous). Sorry Tyler.

When we were leaving, a firetruck was pulling up to do some sort of training, and they were letting the kids play in it. Trenton just stood with amazement, but only wanted to watch from a safe distance. He hasn't gotten brave enough to actually go inside. He did get a cool sticker though!

Fingers Crossed!

Trenton sees the doctor tomorrow and we'll do another blood test. Not sure why we need to go in, since his count did go up a little bit. But, oh well.

I'll keep everyone posted!

Daddy T

So I'm thinking I might have to re-name this blog to "Baby T and Daddy T" and give updates on BOTH of my boys!

As some of you may have heard, Tyler was recently diagnosed with Crohn's Disease. He hasn't met with his doctor after the many tests he had to do (of couse while I was out of town), so we aren't sure what we are facing yet. But he is feeling a lot better, and isn't doubled over in pain every morning. So that's always good! Hopefully we can learn a lot more when he sees the doctor.

Trenton got his platelet count checked on Friday. He has been so bruised up lately, I was just preparing myself to hear the 3 or 5,000 result, so I was super excited when our nurse told us he was at 27,000. She said it's still pretty low, but I was just excited that it didn't plummet! I think we will be seeing the doctor later this week, so we'll see what he wants to do.

Papa DR and I decided that we will just be pessimistic from now on about Trenton's counts, then we can be surprised and happy! :)

Trenton and I just took a trip to GR to visit Uncle Ricky and Auntie Sara. Here's just a few of my favorite pictures:

Another quick update

Just another update from today. The doctor called just to make sure we heard Trenton's count, and to see if we had any questions. This guy is super cool. He said it's completely normal to go so up and down, not that it doesn't suck! He said he was really hoping that we would never have to see him again. I told him I was hoping the same, but that he shouldn't take it personally. He said he hears that a lot.

He still doesn't want to do any other treatments unless Trenton's counts dips way down again and stays there. So it seems he's still optimistic that Trenton might just make himself better. So that made me feel a little better. (Better to the point that I could make it through the rest of the work day).

I'm still feeling pretty defeated. I was just so ready to put this all behind us and move on. But I asked Trenton today if he could work on making more platelets and he let out a very enthusiastic "yea!" so, we'll see.

Crushed

Trenton's count is back down again, to 17,000. I really tried to prepare myself for this, thinking the rise in counts was really too good to be true. But we were still trying to hold on to that hope as well.

I haven't spoken with the doctor yet, so not sure what the next step is. We'll pass it along.

Thanks for all the prayers, Tyler and I need 'em!

Hoping

I am taking Trenton to get another blood draw in a few minutes. He's still been doing really well, although I have noticed a few more bruises. But he bounces all over this place, so it's probably normal!

I will try to update as soon as I can!

Almost there!

I've have been waiting so long to say that Trenton is on his way to recovery!! We got his blood checked last Friday and his counts have more than doubled at 93,000! Tyler and I feel like this huge burden has been lifted, and finally feel that we can celebrate. The doctor even called us later on Friday to see if we had any questions and seemed very excited.

Thank you to everyone who has been so supportive through this whole thing. We have certainly felt all the love! I will continue to update as normal counts are between 150,000-450,000. But we are almost there!

I'll post some pictures later of our amazing camping trip. Trenton is absolutely a camping boy. He did so well and had so much fun. And I didn't have to freak out about him having little falls!!

Thanks again to everyone,

Lucky 48

Trenton's platelet count is at 48,000 today!! That is the highest it's been since all this junk started. When the doctor was reading the results, Tyler and I both had to ask him to repeat it. We are super excited to say the least.

We met with a hematology fellow first, who was super cool, and we kind of did a rundown of everything. Then we talked about our options (which are somewhat different from what the previous doc gave us). But after we got the results, we are definitely going to hold off on doing anything until we see if Trenton's little body will just continue to work this out on its own. But, it's still nice to know we have options!

We talked to the actual doctor later, Chris (NOT Dr. something, he thinks that's dumb). He was also very nice and walked us through what the other treatments are, but again, won't do anything unless his counts go back down.

So now we'll just get his blood checked in 2 weeks to see what it's doing, and decide what to do from here. Hopefully it's just celebrate!

Tomorrow...tomorrow...

So we have our appointment tomorrow. I haven't really thought too much about it, but am starting to get anxious now. Trenton continues to feel really well, and seems to be doing just fine, but we always think that!

At least I am taking the day off, and we get to drive go-carts in the afternoon with Tyler's work. We'll see what Trenton thinks of that! Hopefully he isn't as terrified of those as he was of riding the carousel at the zoo last night, holy cow! You would have thought I was bringing that kid to ride a real lion! I think he was most upset that Papa wasn't saving him!

Switching

So we finally have another appointment for the big man. We go in next week Friday, the 24th. And we are seeing a new doctor. I'm a little nervous about it, mostly because I don't want to hurt the other doctor's feelings and I wonder what we'd say to her if we see her there.

But we were starting to feel a little frustrated when we'd hear something different at every appointment, and we were told we'd get a call the next week, only to have to call them three weeks later. I know my kid is not dying of cancer or anything, but it's still terrifying for us at times. The doctors really do seem to care when we are there, but we also feel like we are being blown off a bit. Maybe it's not a big deal, but it is to us!

Anyway, we'll see how this one does! Trenton continues to do well. He is bruising like any other almost two-year old crazy climbing maniac. He's had a few tiny blood blisters in his mouth, but no nosebleeds for several weeks. He had to be on prednisone recently for asthma, so maybe that helped bump his count up a bit too. We'll see.

His new favorite toy at bedtime is this super cute black bear from his Great Auntie Anna. I just had it sitting there the other day on a pile of other bears, and he INSISTED on holding it while reading his books. He must have known it was from someone who loved him! So thank you everyone for your continued support.

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!

Anticipation

I don't have much to report right now, but we are anxiously awaiting Trenton's next doctor's appointment next week. We are going back to the hematologist on Tuesday where we'll check his count again and see what to do from here. It's been the magical 6 months, so we are quite nervous about what they'll say if he hasn't improved at all.

We were so excited before when they started to go up, but then it leveled off. After that, he has had some more bruising, random crazy nosebleeds, etc. He got a nasty cut on his lip (of course from playing with trucks), but that seems to be going away quickly, with the help of a certain medicine we can give him for any mouth sores. We haven't gotten him checked in a few weeks, so we really aren't sure what to expect!

He still feels wonderful and acts wonderful (minus the usual toddler moments), so we are happy about that. He's also becoming quite a flirt at school, or so his teachers tell me. So we really hope he can remain there all summer and not have to go through any nasty treatments.

Thank you for your continued prayers, and throw 'em out there on Tuesday!

False Hope

Well, Trenton's counts are staying steady at 25,000. I am trying really hard to be grateful that they haven't fallen, but it's extremely difficult. I called the nurse on my way to a meeting, just expecting some great news. When I heard they were the same, my heart just sunk. Then I had to figure out how I was going to get through the meeting!

We'll probably have to just wait another couple weeks and get him checked again. He's at the point now that he screams any time we have to go to Kaiser and we go to the "back room." Maybe I'll have to bring him to Children's next time, the finger poke isn't quite as dramatic for him.

I was just so excited about being able to post some great news, maybe next time...

Prayers Please!

As some of you may already know, I am going to take Trenton to get his blood taken later today. We are so nervous but also very hopeful.

Trenton took a spill the other day and just whacked the back of his head. But the good part was, he didn't bruise at all! Normally that would have resulted in quite a display, so that really makes us think his count will be much higher.

We'll go this afternoon, but probably won't hear anything until tomorrow. Please be praying for high numbers! If it's over 50,000 we can ditch the helmet!!

On the Rise!

I got an e-mail from the doctor this morning saying that Trenton's platelet count has gone up to 26,000!!! It hasn't been this high since December. He hasn't been on any medications, which means they are rising on their own. This is exactly what the doctor was hoping for, well, what ALL of us were hoping for!

Tyler and I are somewhat nervous to be so excited, afraid that this is only temporary. We wonder if maybe the pneumonia made his little system take the focus off the platelets, and fight another infection. I just hope it stays that way.

But we are really trying to stay positive, and just keep praying that the numbers continue to rise.

Trenton got wonderful prescriptions from his Dr.'s Naomi, Caleb and Pete deRidder - so maybe those will keep him strong!

Seriously?....More?

I hesitate to post this, because I feel like the worst parent in the world. But maybe it'll make someone else feel better about their parenting skills!

Trenton has had a little cough the past couple days. He was miserable last night, coughing a lot and just breathing super heavy. He did pretty well at school today, except at the end his teacher said he was really sucking in hard to breathe. So in the lovely snowy traffic, we haul off to Kaiser. An HOUR later we make it there. The doc listens to him and orders a chest x-ray, which Trenton really did not like. He just gave me this look like, "what are you doing to me??"

So, it's discovered he probably has pneumonia. I just keep thinking, hasn't this poor kid been through enough?! Luckily his O2 levels were good, so we were just given some antibiotics. The doctor said he was very glad I brought him in today (thanks for the advice, mom). He thinks he'll start to feel better in about 24 hours. Phew!

So he's sleeping soundly for now!

Side note: Trenton and I have been saying our prayers before he goes to bed lately. He folds his tiny little hands and closes his eyes (mostly), it's so precious you want to cry. And when we're done he says, "yeeeaaa!" I figured God loves enthusiasm!

Another Random Update

Well, Trenton is just chugging along! His eye looks so much better, we don't get all the "oohs" and "aawws" while in public anymore. He still has quite a few bruises on his legs, but those are easily covered up. If it wasn't for his helmet, you wouldn't think anything was wrong with this kid! Which is fabulous that he's so happy.

I missed this conversation at the doctor's last time, but apparently if he does have to go through the other treatment, he wouldn't be able to attend day care because of the risk of infection. We were freaking out about this a little bit, afraid we would have to continue paying in order to keep his spot in school, AND find somewhere else for him to go, or take a ton of time off work. But I spoke with one of the directors at school yesterday and we would be able to take him out, not pay, and not lose his spot. She said they would hate to have him gone though, since they all just love him so much. So it was quite a relief to me, one less thing to worry about!

Anyway, really not too much to report. We have his 18 month appointment in two weeks, and we'll just check his blood at that time. Thanks again to everyone for your continued prayers, cards, notes, etc. I'm still amazed by everyone's support.

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.

back down

Trenton had his blood checked again yesterday. We just went to Kaiser which is nice, it's usually a little faster and closer. At least they didn't call us at 10:30 at night which has happened a few times, but the doctor did e-mail me this morning saying his count was down again to 7,000. We are hugely disappointed, but were somewhat prepared for that too.

At our last visit with the hematologist, I asked the doctor what she would like to see his count be at his next visit. She said she would be happy with 50,000. But she would be half-happy with 25,000. Maybe she'll just have to be a fraction of happiness? We'll see.

So we do have another appointment this coming Monday and will check him again and decide what to do from here. Probably another round of the IVIG, which wasn't too bad, more frustrating for Trenton than anything, since he can run around in his normal fashion. But at least he could flirt with more nurses!

I want everyone to know how much we appreciate your notes, cards, e-mails, etc. We just got a card in the mail today, and I just felt so taken care of. I am saving everything I can for Trenton to show him later. I want him to know how loved he is, and how much people cared about him. So, thanks.

9,000!

So we checked in today at the front desk of Children's Hospital, we usually give them our names and they look up our driver's license, blah blah blah. But, when you come on a regular basis, you get fancy laminated nametags so you don't have to check in each time. I guess we are official now!

Trenton went through his regular workup, he's getting quite good at it! He actually let them put the pulse ox on his finger (this is the worst part of the whole process for him)! Then they did the finger poke to get some blood. He didn't even make a sound! He was just sitting on my lap playing with this silly toy. Then he kept trying to lean over so he could watch the lady put his blood in the tube. He was quite fascinated by the whole thing.

After some waiting in our room, cute doctor tells us that Trenton's platelet count is 9,000. This is still super low, but at least he's headed in the right direction. They checked him out a bit, inspecting new bruises he has and looking in his ears, etc. He was so funny through the whole thing, just smiling and laughing at anyone who would look at him. Dr. Jones (really, that's her name) said he made her day with his smile! At one point, cute doctor was looking in his eyes with the light, and getting in close. Trenton just kept leaning in smiling, I thought he was going to give him a kiss! Our doctor said she has never seen a 16 month old act so happy through that exam.

So, we will continue with the Prednisone for two more weeks. We'll get his blood checked at Kaiser next week and then see the Hematologist again the week after that. If his count is at 50,000 or above, she'll wean him off the Prednisone and see how he does. If not, we may need to do another round of the IVIG (the infusion he did while in the hospital). She thinks that he really didn't get a fair shot at that working last time, since he had the bronchiolitis at the same time.

She still doesn't want to do anything really aggressive to his little body, just take precautions and let him work it out. She acknowledged that it feels like they are dragging their feet, but they just don't want to give harsher drugs (like chemo) to him yet. We appreciate that she said this, since we feel like we are just told to wait all the time. We are sick of waiting. But, we are getting quite good at it now.

Helmet

So we got Trenton a helmet this past Thursday when we were at Children's. I really hated it at first. I think because it's just this constant reminder that something is wrong. Also, it looks pretty funny. But I have to admit it makes me feel better when he wears it. He wore it at school on Friday and most of the weekend. I think he's getting pretty used to it! His friend even wanted to wear it when I gave him a break from it. I think that helped. So we can let him run around with his usual craziness, and don't worry so much about him falling down every 2 minutes.

He still seems to feel pretty good. The blood blister on his mouth looks MUCH better, so he doesn't look so beat up anymore. He still has his black eye from over a week ago, but it's a light purple now. It still looks like he got a hold of some eye shadow and just went to town.

We are starting to see that side effects of the Prednisone. He gets a little cranky in the evening, and doesn't sleep very well. He was up and ready at 5:30 this morning! But we'll take it if it means his platelet count will go up. We'll know more on Tuesday when we see the Hematologist again. Stay tuned!

Random Pictures

Trenton giving his new elephant a hug
(before he threw him across the room)

We were on the Oncology/Hematology floor at Children's, so Trenton was quarantined to his room because of the RSV. They let us go outside one day, but he had to go out like this.

Daddy just having fun with his camera, showing off some of Trenton's bruises

Trenton having fun with bandanas while helping mommy clean

Background

We decided to start this for those of you who want to keep update on what's going on with Trenton. We send out occasional e-mails, but we aren't always sure who cares!

So, how this whole adventure started. In December, I noticed Trenton had blood in his poop one day. When it happened again, I called the doctor and she wanted us to come in. While getting him ready, we noticed all these little red dots all over him. Not thinking it was related, we figured we'd ask them about that too. Well, we discovered they are related. After getting checked out at the after-hours clinic (it was a Saturday), we were sent to Children's. That's where we were told he probably has ITP, which basically means he has a low platelet count. At that time, he had about 12,000 platelets (normal is 150,000-450,000). We were given Prednisone for two weeks. That brought his count up to 30,000. After we finished, it went back down to about 10,000.

We started getting Trenton's blood checked typically every week. It was continually very low. He was such a trooper through the whole thing, the nurse taking his blood said he did better than some adults!

One day we got it checked and the doctor called us at 10:30 at night to tell us his count dropped to 3,000. It's never good when a doctor calls you that late. She tells us to watch for fevers or bone pain. How do you ask a 15 month old if he has bone pain?? Well, a few days later he developed a high fever (and had a nasty cough). So, to the ER we went. After many tests, it was discovered that he had RSV (and still crazy low platelets). So we were admitted to the hospital at about 3:30 in the morning.

They wanted to try this other treatment called IVIG. It's an infusion of antibodies that's given through an IV and takes about 4 hours. We did this two days in a row. They said it can take about 5 days to show an increase of platelets, but that it works in 90% of kids. When they finally discharged us (with oxgyen because of the RSV), it still hadn't shown any increase.

When I brought Trenton to get checked the next week at his normal doctor, the doctor called and was excited that his count went up to 18,000! Woo hoo! Well, we discovered later that it really only went up to 10,000. But the doctor was still happy because it was an increase. A week later, the doctor calls again at 10:30 at night (what's with that?) and tells us he was back down to 3,000. That's when we were introduced to the Hematology doctors at Children's. The doc was concerned about why his platelets hadn't gone up after the treatments he's had, so she wanted Trenton to get his bone marrow checked. We did that last week, and all is well. So there's no worry about leukemia or anything. She tells us to wait 3 weeks and then we'd get checked again and then decide what to do.

Well, he had two nasty falls this week and we brought him into the clinic again today. He has this nasty cut on his lip that just won't stop bleeding. They gave us Prednisone again and another med that's supposed to help him with the bleeding. We'll go back next week to check his blood again.

Until this week, Trenton has been feeling great. He is so happy and crazy and playful (which is why he has so many bruises). So we are so grateful that this hasn't been something that makes him feel bad or anything. Of course now, his lip hurts. But that should heal soon I hope.

We've been amazingly supported by friends, family, coworkers and church. We thank you all, and have never felt so loved. Trenton is our world, we never realized how much we would love this little guy, and it kills us to see him suffer. So everyone's support has been much appreciated.

If you really care about what ITP is, Google it, or go to: http://www.pdsa.org/itp-information/index.html