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.
Tuesday, February 24, 2009
Tuesday, February 17, 2009
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.
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.
Sunday, February 15, 2009
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!
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!
Thursday, February 12, 2009
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 cleanBackground
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
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
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