Tuesday, March 29, 2011
Thursday, March 24, 2011
Good news!!!
We had Jackson's first follow-up blood draw this morning, and the news is good! His platelet count is up to 392,000! We are so, so grateful for how well the IVIG has worked for him so far.
Some things I learned from the doctor today... Jackson has a 90% chance of having Acute ITP - I was happy to hear the odds on that. Acute ITP lasts anywhere from 2 to 6 months. During that time, there is a somewhat decent chance he will have to get another treatment if his platelet count goes back down once the IVIG wears off (usually wears off between 3 and 8 weeks after receiving it). Because of his excellent response to the treatment, we get to wait 3 weeks before getting another blood test (but we'll need to be watching closely for new bruises, nosebleeds, etc.). The results to that blood test will determine the frequency of more tests in the future.
If 6 months pass and we're still dealing with drops in platelets, it will mean he has Chronic ITP. The doctor said that he would have it for the rest of his life, although I HAVE heard of children with Chronic ITP going into remission.
We are so feeling so grateful today for our little Jackson.
Some things I learned from the doctor today... Jackson has a 90% chance of having Acute ITP - I was happy to hear the odds on that. Acute ITP lasts anywhere from 2 to 6 months. During that time, there is a somewhat decent chance he will have to get another treatment if his platelet count goes back down once the IVIG wears off (usually wears off between 3 and 8 weeks after receiving it). Because of his excellent response to the treatment, we get to wait 3 weeks before getting another blood test (but we'll need to be watching closely for new bruises, nosebleeds, etc.). The results to that blood test will determine the frequency of more tests in the future.
If 6 months pass and we're still dealing with drops in platelets, it will mean he has Chronic ITP. The doctor said that he would have it for the rest of his life, although I HAVE heard of children with Chronic ITP going into remission.
We are so feeling so grateful today for our little Jackson.
Sunday, March 20, 2011
Jackson's hospital stay
We had an eventful weekend, and I'm warning you that this is the long version, or the "blue" version, as my family likes to call it. We took Jackson into the doctor on Thursday because he had been having some weird symptoms... bruising all over his legs, nose bleeds, and an old scab had been bleeding. He had also had a rough night on Tuesday where he couldn't stop throwing up. Then Thursday he had a fever, which finally got us to go in. The doctor seemed nervous right away. She asked us a bunch of questions about family medical history, and sent us to the lab to get some blood drawn. Jackson was so brave. Tom, myself, and Joni honestly marveled for hours at how brave he was about getting his blood drawn. I think we were all expecting a complete meltdown or something.
The next day we got a call from the pediatrician telling us that his platelet count was 6,000 (it is supposed to be 150,000 to 450,000) and that we needed to get to the local children's hospital immediately and have him admitted to the hematology floor. My heart sank. All I could think about was leukemia. I had just recently looked up the kind of leukemia that my mom has and learned that her type is common in both adults and children. I don't remember reading that before.
The whole drive to the hospital, Tom and I were both preparing ourselves for the worst, but we knew there were some other things besides leukemia that can cause low platelet count, so we were hoping for that. After being admitted (which took for.ev.er.) a pediatric hematologist came in and explained the different things that could be going on, and told us what the plan was. Jackson got some more blood drawn, and an IV put in.
Once the results came in, the doctor seemed pretty sure that what Jackson has is ITP, which is short for idiopathic thrombocytopenic purpura. It's basically where the spleen starts creating antibodies to fight the platelets in your body. The problem with his platelet count being so low is he runs the risk of bleeding internally - either from some sort of trauma (hard fall, car accident, etc.) or sometimes ITP patients will just start bleeding internally for no apparent reason. But we were so relieved to hear that all signs were pointing towards ITP.
So we obviously went ahead with treatment, which included two rounds of IVIG, or intravenous immune globulin. It's a blood derived antibody something-or-other, that I couldn't accurately describe if I wanted to. The first round of treatment was on Friday night. Jackson and I did not sleep well that night. He started having reactions to the treatment (shaking really badly all over, and really high fever), so they had to slow down how quickly he received it (which made it take 7-8 hours through the night), and it also meant that they monitored him more. They took his vitals every 15 minutes for several hours, then finally every 30 minutes. Jackson and I finally went to sleep (sort of) at about 4 am. The only amusing part of that night was that Jackson kept saying funny things when he was half asleep... he talked about Grandpa, and the "Jesus ghosts", and his friends from Joy School. He also got really, really sad because Tom wasn't there (he was home with Joni that night).
I have to laugh now, thinking back to how feisty Jackson would get about the blood pressure cuff going off so often. Several times he just sat up in bed and yelled, "I'M DONE!" and he would ripe off the cuff and throw it onto the floor.
We were worried about how he'd feel all day Saturday because we were told that some patients get really sick the next day. But I'm pretty sure it was one of the funnest days of his life, thanks to family and friends. He was literally showered with gifts. I couldn't believe the outpouring of love and support from our ward. It really took me off guard. Jackson had more treats, toys, and balloons than he knew what to do with. The only really hard part about that day was when Jackson lost his initial IV, and had to get another one in the other arm. It was a long drawn out thing, and I was near tears myself. But I'm pretty sure his joy from receiving a Percy train and his own box of fruit snacks helped outweigh the pain. :)
Saturday night went much better. They administered the treatment a lot more slowly this time, and Tom stayed overnight at the hospital with me. I think I actually slept a little. The nurse that night was also very gentle and nice with Jackson. He got another bloody nose in the middle of the night, and all I remember is the nurse's soft sweet voice whispering to Jackson that she was just going to clean up the blood and that he could keep sleeping, and that he was going to be okay.
Then first thing this morning the hematology doctor came in and told us that his platelet count had gone up to 89,000! Besides the fact that this is a much healthier number, it also reinforces the theory that what he has is ITP. The doctor reiterated that it doesn't mean he is 100% in the clear for more serious underlying diseases, but the odds are definitely in our favor now. He will have to get regular blood draws for at least the next several weeks to make sure his body is able to sustain the increase in platelets. From the reading I did today, it sounds like the effect from the IVIG is known to wear off in a couple of weeks. So I feel like the blood tests we get three weeks from now will mean a lot.
Some of the pictures from this weekend... I had a bunch of pictures that didn't turn out for some reason, so I was bummed about that.... but this is probably sufficient... :)
The next day we got a call from the pediatrician telling us that his platelet count was 6,000 (it is supposed to be 150,000 to 450,000) and that we needed to get to the local children's hospital immediately and have him admitted to the hematology floor. My heart sank. All I could think about was leukemia. I had just recently looked up the kind of leukemia that my mom has and learned that her type is common in both adults and children. I don't remember reading that before.
The whole drive to the hospital, Tom and I were both preparing ourselves for the worst, but we knew there were some other things besides leukemia that can cause low platelet count, so we were hoping for that. After being admitted (which took for.ev.er.) a pediatric hematologist came in and explained the different things that could be going on, and told us what the plan was. Jackson got some more blood drawn, and an IV put in.
Once the results came in, the doctor seemed pretty sure that what Jackson has is ITP, which is short for idiopathic thrombocytopenic purpura. It's basically where the spleen starts creating antibodies to fight the platelets in your body. The problem with his platelet count being so low is he runs the risk of bleeding internally - either from some sort of trauma (hard fall, car accident, etc.) or sometimes ITP patients will just start bleeding internally for no apparent reason. But we were so relieved to hear that all signs were pointing towards ITP.
So we obviously went ahead with treatment, which included two rounds of IVIG, or intravenous immune globulin. It's a blood derived antibody something-or-other, that I couldn't accurately describe if I wanted to. The first round of treatment was on Friday night. Jackson and I did not sleep well that night. He started having reactions to the treatment (shaking really badly all over, and really high fever), so they had to slow down how quickly he received it (which made it take 7-8 hours through the night), and it also meant that they monitored him more. They took his vitals every 15 minutes for several hours, then finally every 30 minutes. Jackson and I finally went to sleep (sort of) at about 4 am. The only amusing part of that night was that Jackson kept saying funny things when he was half asleep... he talked about Grandpa, and the "Jesus ghosts", and his friends from Joy School. He also got really, really sad because Tom wasn't there (he was home with Joni that night).
I have to laugh now, thinking back to how feisty Jackson would get about the blood pressure cuff going off so often. Several times he just sat up in bed and yelled, "I'M DONE!" and he would ripe off the cuff and throw it onto the floor.
We were worried about how he'd feel all day Saturday because we were told that some patients get really sick the next day. But I'm pretty sure it was one of the funnest days of his life, thanks to family and friends. He was literally showered with gifts. I couldn't believe the outpouring of love and support from our ward. It really took me off guard. Jackson had more treats, toys, and balloons than he knew what to do with. The only really hard part about that day was when Jackson lost his initial IV, and had to get another one in the other arm. It was a long drawn out thing, and I was near tears myself. But I'm pretty sure his joy from receiving a Percy train and his own box of fruit snacks helped outweigh the pain. :)
Saturday night went much better. They administered the treatment a lot more slowly this time, and Tom stayed overnight at the hospital with me. I think I actually slept a little. The nurse that night was also very gentle and nice with Jackson. He got another bloody nose in the middle of the night, and all I remember is the nurse's soft sweet voice whispering to Jackson that she was just going to clean up the blood and that he could keep sleeping, and that he was going to be okay.
Then first thing this morning the hematology doctor came in and told us that his platelet count had gone up to 89,000! Besides the fact that this is a much healthier number, it also reinforces the theory that what he has is ITP. The doctor reiterated that it doesn't mean he is 100% in the clear for more serious underlying diseases, but the odds are definitely in our favor now. He will have to get regular blood draws for at least the next several weeks to make sure his body is able to sustain the increase in platelets. From the reading I did today, it sounds like the effect from the IVIG is known to wear off in a couple of weeks. So I feel like the blood tests we get three weeks from now will mean a lot.
Some of the pictures from this weekend... I had a bunch of pictures that didn't turn out for some reason, so I was bummed about that.... but this is probably sufficient... :)
Jackson's poor bruised legs
(that sheet looks gross, but it's just because he had spilled his juice).
This was taken while we waited in the lobby to check in. He absolutely LOVED the fish tank, and spent the next two days watching Finding Nemo that we borrowed from the hospital.
He loved that he could order anything he wanted at every meal. His first meal was macaroni and cheese, fries, honey nut cheerios, and chocolate milk. I promise he was ecstatic about it - you just can't tell because he has the Sowards stare that naturally occurs when watching tv.
This basket came from people in our ward. The tongue sticking out is a sign of absolute approval.
And this is when he received a little Percy train from his Joy School friends. Again, the tongue. :) This package also included several home made cards and signs from Joni and some of the other kids in the ward.
This was after he first started getting his treatment the first night. He called his IV arm his "robot arm". And he kept showing everybody at the hospital the race car sticker that he picked out to go on it.
Taking his vitals for the millionth time. He was such a trooper.
Leaving the hospital on Sunday morning. We were soooo happy to get out of there!
I felt like an absolute zombie driving home. All three of us immediately fell asleep for a couple of hours (some friends still had Joni and even took her to church). I feel like it will probably take us (mostly him) a few days to feel back to normal. He is still getting fevers, and he's extremely behind on sleep. And I'll tell you what - after three days of everyone waiting on him hand and foot, he has become quite demanding. :)
A few more things I want to mention. It gets humbling, fast, when you spend a few days on a hematology/oncology floor where you see bald children walking around with their IV towers. It was a constant reminder of how blessed we are that this will most likely resolve itself in the next several months.
I'm also so grateful for our family and friends who were praying, and even fasting, for our little Jackson. We received more texts, emails, phone calls, and facebook messages than we can count. It was also so nice for him to receive tangible distractions from his grandparents, his Joy School friends, and his ward family. We also had different friends watch Joni all weekend long, even overnight. My visiting teachers were amazing. As soon as I got the call from the pediatrician on Thursday I knew I could call them and they would help me. I feel like the church needs to do a little demo video on our ward as an example of how the church should always work when someone needs help!
Most of all, I am grateful that Jackson seems to be doing fine, and that it looks like he will even be fine in the long run. Tom and I realize that there is a very small chance that that could change, but for now we are focusing on the huge blessing of a good outcome to his recent treatment, and we will be praying that the upcoming blood tests continue to show improvement.
I feel like I just got up and gave a huge, drawn-out travelog/thanktimony about our weekend. Oh well, I'm sure that at least Jackson's grandparents will read through the whole thing. :)
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