And we're home. Pulled in just as Emma and Spencer we're getting home, so all is well.
I didn't mention that we also spent several hours yesterday at Primary Children's. Jake had a follow-up eye exam with Dr. Hoffman. Still 20/20--can't get better than that. His optic nerves are a little paler than normal--Dr. Hoffman says that's indicative of damage and almost certainly due to the radiation. They'll keep an eye on it (no pun intended!)--we go back in January for another eye exam.
Yesterday they sent us across the street to the Moran Eye Center for two further tests that he had the first week in the hospital. One where he's hooked up with probes on his ears and the back of his head that measures brain wave and optic nerve activity and also a visual field test to check peripheral vision. He came through both just fine--the first test showed that his left eye (where he got the bulk of the radiation) had slowed down almost imperceptibly in reaction times (a couple thousandths of a second) but statistically unchanged from January.
The good news just keeps adding up and we treasure it.
Oh, and how's this for coincidence? Today there was a little girl being transfued next to us--turns out it was the same girl that had her last chemo in the room next to Jake's last week. The nurses commented to her about going in to sing and she told them "I only have to come back for scans now."
Ah, joyous day.
Wednesday, September 24, 2008
The Unexpected
But not really.
They decided last week not to transfuse Jacob during his stay for chemo. And vitamins and B12 supplements apparently couldn't make enough of a difference. His hematocrit on Monday was 21 (the low end of normal is 35).
So here we are in clinic, waiting for the blood bank to send up packed red blood cells for transfusion.
It's only Jake's second transfusion in 38 weeks, so we have nothing to complain about. They even let us go out to lunch between drawing the blood for type and crossmatch and waiting to begin. We went down to KFC/A&W on 4th South to eat, which perked Jake up considerably. And he didn't think it the worst thing in the world to miss school :)
Hopefully, this transfusion will be enough to get him through the next (and final) round of chemo. The doctor told us what to expect after chemo on October 6-7: Jake will have the normal two weeks of blood draws to check counts and then he'll come back in for MRI and CT scans. Once we get the clearance from those, we can schedule surgery to have his port removed. (The great benefit of removing the port is that it removes the number one fear of infections so we no longer have to visit the ER with every fever.) The doctor expects all that will be done by Halloween.
Which might move it up on my list from second favorite to first favorite holiday.
Still no blood yet.
They decided last week not to transfuse Jacob during his stay for chemo. And vitamins and B12 supplements apparently couldn't make enough of a difference. His hematocrit on Monday was 21 (the low end of normal is 35).
So here we are in clinic, waiting for the blood bank to send up packed red blood cells for transfusion.
It's only Jake's second transfusion in 38 weeks, so we have nothing to complain about. They even let us go out to lunch between drawing the blood for type and crossmatch and waiting to begin. We went down to KFC/A&W on 4th South to eat, which perked Jake up considerably. And he didn't think it the worst thing in the world to miss school :)
Hopefully, this transfusion will be enough to get him through the next (and final) round of chemo. The doctor told us what to expect after chemo on October 6-7: Jake will have the normal two weeks of blood draws to check counts and then he'll come back in for MRI and CT scans. Once we get the clearance from those, we can schedule surgery to have his port removed. (The great benefit of removing the port is that it removes the number one fear of infections so we no longer have to visit the ER with every fever.) The doctor expects all that will be done by Halloween.
Which might move it up on my list from second favorite to first favorite holiday.
Still no blood yet.
Monday, September 15, 2008
One To Go
After today, that is.
This is number 13 out of 14 inpatients. (Good thing I don't believe in bad luck.)
We're tucked away in a quiet corner room, next to someone who is having her last chemo. Talk about an upbeat atmosphere.
Now, you would think that having done this 12 times in the last 8 months, I would have the ritual down pat.
You would be wrong.
I forgot the pillow--Jake's nice king-size pillow. He is reduced to rearranging multiple hospital pillows to try and make himself comfortable.
Other than that, all is well. The 3rd season of Supernatural was released on DVD and came last week, so we're back to watching the Winchester Brothers' adventures. (Jake doesn't like it when I guess what's happening--I tell him I didn't watch years of X-Files and Buffy for nothing.)
His counts are low--his ANC just barely made the cut-off for doing chemo at 748. And his hematocrit is at 24, so he'll likely get a transfusion tonight of packed red blood cells. Might as well get it all done at once :)
This is number 13 out of 14 inpatients. (Good thing I don't believe in bad luck.)
We're tucked away in a quiet corner room, next to someone who is having her last chemo. Talk about an upbeat atmosphere.
Now, you would think that having done this 12 times in the last 8 months, I would have the ritual down pat.
You would be wrong.
I forgot the pillow--Jake's nice king-size pillow. He is reduced to rearranging multiple hospital pillows to try and make himself comfortable.
Other than that, all is well. The 3rd season of Supernatural was released on DVD and came last week, so we're back to watching the Winchester Brothers' adventures. (Jake doesn't like it when I guess what's happening--I tell him I didn't watch years of X-Files and Buffy for nothing.)
His counts are low--his ANC just barely made the cut-off for doing chemo at 748. And his hematocrit is at 24, so he'll likely get a transfusion tonight of packed red blood cells. Might as well get it all done at once :)
Wednesday, September 10, 2008
Last Clinic Treatment
Was yesterday.
And all I can say . . . Why didn't I ask for the very last appointment of the day all along?
Our appointment was at 3:00, so that Jake only had to miss a little bit of study hall, and the clinic was absolutely empty when we got there. Okay, I think there were a few patients in rooms, but the waiting room was dead quiet. Everything went like clockwork and we were out of there by 4:00, giving us a jump on the worst of the rush hour traffic.
I will just have to ask for the late appointment whenever we have follow-up care.
We actually met a new oncologist yesterday. He was very nice and had a med student with him. He asked for a history from us, so the med student could see how the process goes, and he kept asking her things like, "Do you know why he's on neupogen?" and "Why does he take Septra every week?" It was really quite entertaining for us. (For the record, she's good. She got all the answers right. Though Jake wasn't that impressed--after all, he knew all the answers too.)
The most interesting comment came when the doctor was asking Jake about school. And Jake was being, well, twelve. ("Yes, I'm in school. It's okay. I get tired but mostly I'm just bored. Are you done yet?")
The doctor said to the med student, "This was one of my great lessons the first time I entered a pediatric cancer ward. I expected it to be a place of great sorrow and despair, but instead it was full of kids living their lives and families being pretty normal."
Is there sorrow in pediatric cancer wards? Absolutely. But the great thing about kids is how resilient they are and how well, generally speaking, they deal with the side effects. In fact, Jake came to me last night and said, "When you told me I had cancer, it didn't seem that horrible. It was just going to be something I had to do."
So here's to living our lives pretty normal. We're keeping our fingers crossed on Jake's hematocrit--it was 25.2 yesterday. If it goes below 25, they transfuse. He has inpatient next Monday and Tuesday, then another one on October 6-7.
And that will be it.
Wow.
And all I can say . . . Why didn't I ask for the very last appointment of the day all along?
Our appointment was at 3:00, so that Jake only had to miss a little bit of study hall, and the clinic was absolutely empty when we got there. Okay, I think there were a few patients in rooms, but the waiting room was dead quiet. Everything went like clockwork and we were out of there by 4:00, giving us a jump on the worst of the rush hour traffic.
I will just have to ask for the late appointment whenever we have follow-up care.
We actually met a new oncologist yesterday. He was very nice and had a med student with him. He asked for a history from us, so the med student could see how the process goes, and he kept asking her things like, "Do you know why he's on neupogen?" and "Why does he take Septra every week?" It was really quite entertaining for us. (For the record, she's good. She got all the answers right. Though Jake wasn't that impressed--after all, he knew all the answers too.)
The most interesting comment came when the doctor was asking Jake about school. And Jake was being, well, twelve. ("Yes, I'm in school. It's okay. I get tired but mostly I'm just bored. Are you done yet?")
The doctor said to the med student, "This was one of my great lessons the first time I entered a pediatric cancer ward. I expected it to be a place of great sorrow and despair, but instead it was full of kids living their lives and families being pretty normal."
Is there sorrow in pediatric cancer wards? Absolutely. But the great thing about kids is how resilient they are and how well, generally speaking, they deal with the side effects. In fact, Jake came to me last night and said, "When you told me I had cancer, it didn't seem that horrible. It was just going to be something I had to do."
So here's to living our lives pretty normal. We're keeping our fingers crossed on Jake's hematocrit--it was 25.2 yesterday. If it goes below 25, they transfuse. He has inpatient next Monday and Tuesday, then another one on October 6-7.
And that will be it.
Wow.
Sunday, September 7, 2008
Whew
Still here, sorry for the long delay. Remember that phrase about life happening? It's been happening all over the place the last two weeks :)
Jake had an inpatient stay on August 25-26. It was uneventful, which is something I aspire to greatly these days. He did throw up right after they'd disconnected his IV to let us go home, so they hooked him back up and gave him an extra dose of anti-nausea drugs. He slept for six solid hours when we got home--I don't think he even rolled over. In fact, I kept going in to make sure he was still breathing. Haven't done that in many years.
And then the next morning, he got up and went to school. Made it the whole day. How can I not be proud of a kid like that?
We've also had a clinic visit since my last post, so that leaves one more clinic visit on Tuesday of this week. I'm not sure I quite grasp that yet. But I'm looking forward to wrapping my mind around the concept.
All has not been perfect. Jacob's body has been put through so much in eight months that it's no surprise his blood counts have trended downward and are getting harder to raise in between inpatient stays. For the last two weeks we've hovered on the edge of a transfusion of packed red blood cells because of his low hematocrit counts. And his ANC has been consistently low this last month. It's the measure of his body's ability to fight an infection, and Jake has been within normal range much of his treatment time. But now, even with the daily shots of neupogen, the ANC isn't rebounding much.
Which led us to Wednesday of last week.
Jake come home from school complaining about how cold it had been and how he'd been shaking throughout the day.
Then he took his temperature--101.5.
In the 30 minutes it took me to talk with the clinic and the oncologist and make arrangements to take Jake to our local ER, his temp went up almost a full degree.
You know how I walk around pretty normal and feel optimistic most of the time? I'm here to tell you that the fear is just a number away and that rising temperature set off every fearful alarm bell I have.
It was a long drive to the ER.
(By the way, I've decided this is the only way to arrive in an ER--when an oncologist has called ahead and said, "You've got a kid coming in who is immune supressed and is running a fever." No waiting around for us. And no big room with curtains between the beds--Jake got his own room with a door and a TV. The only way to go.)
I had packed our hospital bag, fully expecting we would end up at Primary Children's for several days. (Based on the fact that his ANC the day before had been only 800--1500 is the low end of normal.) But we were there only two hours and then came home. His temperature was down to 100 degrees even and didn't change over the two hours, his blood cultures and urinalysis were normal, the chest x-ray was clear, and the blood counts showed that his ANC had come up to 1500.
So I bought him pizza on the way home and kept checking his temperature through the night. By morning it was normal and he went to school for the afternoon.
We are a gladsome family.
Hope you are all the same.
Jake had an inpatient stay on August 25-26. It was uneventful, which is something I aspire to greatly these days. He did throw up right after they'd disconnected his IV to let us go home, so they hooked him back up and gave him an extra dose of anti-nausea drugs. He slept for six solid hours when we got home--I don't think he even rolled over. In fact, I kept going in to make sure he was still breathing. Haven't done that in many years.
And then the next morning, he got up and went to school. Made it the whole day. How can I not be proud of a kid like that?
We've also had a clinic visit since my last post, so that leaves one more clinic visit on Tuesday of this week. I'm not sure I quite grasp that yet. But I'm looking forward to wrapping my mind around the concept.
All has not been perfect. Jacob's body has been put through so much in eight months that it's no surprise his blood counts have trended downward and are getting harder to raise in between inpatient stays. For the last two weeks we've hovered on the edge of a transfusion of packed red blood cells because of his low hematocrit counts. And his ANC has been consistently low this last month. It's the measure of his body's ability to fight an infection, and Jake has been within normal range much of his treatment time. But now, even with the daily shots of neupogen, the ANC isn't rebounding much.
Which led us to Wednesday of last week.
Jake come home from school complaining about how cold it had been and how he'd been shaking throughout the day.
Then he took his temperature--101.5.
In the 30 minutes it took me to talk with the clinic and the oncologist and make arrangements to take Jake to our local ER, his temp went up almost a full degree.
You know how I walk around pretty normal and feel optimistic most of the time? I'm here to tell you that the fear is just a number away and that rising temperature set off every fearful alarm bell I have.
It was a long drive to the ER.
(By the way, I've decided this is the only way to arrive in an ER--when an oncologist has called ahead and said, "You've got a kid coming in who is immune supressed and is running a fever." No waiting around for us. And no big room with curtains between the beds--Jake got his own room with a door and a TV. The only way to go.)
I had packed our hospital bag, fully expecting we would end up at Primary Children's for several days. (Based on the fact that his ANC the day before had been only 800--1500 is the low end of normal.) But we were there only two hours and then came home. His temperature was down to 100 degrees even and didn't change over the two hours, his blood cultures and urinalysis were normal, the chest x-ray was clear, and the blood counts showed that his ANC had come up to 1500.
So I bought him pizza on the way home and kept checking his temperature through the night. By morning it was normal and he went to school for the afternoon.
We are a gladsome family.
Hope you are all the same.
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