We are waiting on the results of The Boy's CBC from today to give us a better indication of when chemo will be starting. I think that my preference is to just stay here and get it done as soon as he is ready. Which means, of course, that we'll probably have to leave and then come back.
The temperature issue resolved itself over the course of a few hours, so they didn't end up doing blood cultures. Thank goodness. For anyone interested, I asked about the first culture from 2 weeks ago, and the doctor said that the bacteria grew in clusters, not chains.
We have made some new cancer friends. Not sure if we'll be in touch or not, but I made contact with the mother of a middle schooler and the parents of a 4-year-old. Both new diagnoses, both leukemia. Leukemia seems to be a little more complex, and treatment seems to be more intense at first and gets easier if a satisfactory remission is attained. I don't know much about it; I'll look it up. Still a very long course of treatment, and the state of high alert is required for longer with patients and families. No matter how you slice it, cancer sucks. But it does help a little bit to make new "cancer friends" and to be in a position to tell them that yes, it's pretty lousy, but the treatment center is great (I saw the older patient with her mom this morning and mentioned that they have PS3 there), and that there are other resources available, and to call me if they need things because sometimes I'm in a position to help.
I abandoned this post at this point because of something or other. It's hard to remember stuff while in the hospital. For example, if someone calls and you tell them you'll call back after vitals or something like that, you just...forget. Nothing personal. It just happens.
The Boy had an okay breakfast and a good lunch. Thinking about it, his eating over the past few days has been average, as opposed to earlier when he'd just eat and eat and eat. I bet he grew.
Monday, May 4, 2009
Sunday, May 3, 2009
Under "Pressure"
The blood pressure thing is still not so under control, and today he looks puffy to boot. Also, this afternoon his temperature has gotten up into the "go to the hospital" range but only just so. The oncologist was there around that time, and we joked that we'd have to pack up our stuff and hurry over to the ER. She got a kick out of that. It stayed there, but no higher, after his nap.
At the time of the first temp, The Boy was playing with a ball that I brought upstairs, throwing it to Musical Daddy and to the doctor. He looked pretty good, and she said that we'd wait on blood cultures. Because it's just what we need--another infection.
Still not sure when chemo starts. No clue. So we may go home Tuesday. And then come back. So we have another week here, but we don't know if it is consecutive or not.
At the time of the first temp, The Boy was playing with a ball that I brought upstairs, throwing it to Musical Daddy and to the doctor. He looked pretty good, and she said that we'd wait on blood cultures. Because it's just what we need--another infection.
Still not sure when chemo starts. No clue. So we may go home Tuesday. And then come back. So we have another week here, but we don't know if it is consecutive or not.
Saturday, May 2, 2009
Happy boy
The Boy has learned the word "Happy" and said it while sitting on my lap, snuggling...he said "hap-py...hap-py... hap-py" and then later on, when we were resting, I asked if he was happy and he said "hap-py" again. Such a sweetheart.
In The Loop
I left the hospital yesterday afternoon so that I'd be home for the guy fixing the shower. I also got a little nap on the easy chair.
I rested at home until it was time to leave for a concert. I had been planning to go back to the hospital at dinnertime, but Grandma said that she was just fine with The Boy and not to worry. And I really don't, because Grandma is the best.
The concert was great. Additionally, there was a guest conductor who was the Director of Bands while I was doing my undergraduate work. I played in his bands for a few years. He remembered me, remembered Musical Daddy, and of course asked where he was. I told him that Musical Daddy was directing his chorus at their contest this weekend. He said that I looked the same as I did when I was a student. He didn't mention the watermelon that I seemed to be carrying under my dress. But that felt pretty good to hear, considering that I was 20 years old the last time he saw me.
The director of the wind ensemble was also glad to see me and asked about Musical Daddy and The Boy. His wife is a colleague of mine (or was, anyway, and hopefully will be again) and a friend, and it was nice to see her and another colleague that evening and talk about music stuff and school stuff and think about things that normal people do.
I was glad to get informed, anyway, about some positive and some negative things that have been going on in our school and our district.
I woke up every few minutes starting at about 6:30 because I have been so accustomed to getting up that early...but I really wanted to stay in bed longer. Finally I dragged my tired self out of bed and into the shower at 7:30. I stopped at the store to pick up more grape juice and some ginger ale, along with a few other items, and I arrived at the hospital around 9:00.
Grandma said that The Boy had a good night. He was up at 6:30--maybe he was channeling me so that I'd wake up with him, even though I wasn't there. Who knows. I don't yet know how his blood pressure has been. I should have thought to ask.
Currently, he is taking 5 mg of Vasotech in the morning, and 2.5 mg of Norvasc in the morning and at night. He tolerated my giving it to him in grape juice--I put a bit in the cup and he drank from the cup. The nurse wanted him to get more of it, though, so I had to put the rest in a syringe with the juice, which he wasn't crazy about, but grape juice hides icky flavors pretty darned well.
No big plans for today other than to hang out with Grandma and The Boy. He is very snuggly and sweet.
I rested at home until it was time to leave for a concert. I had been planning to go back to the hospital at dinnertime, but Grandma said that she was just fine with The Boy and not to worry. And I really don't, because Grandma is the best.
The concert was great. Additionally, there was a guest conductor who was the Director of Bands while I was doing my undergraduate work. I played in his bands for a few years. He remembered me, remembered Musical Daddy, and of course asked where he was. I told him that Musical Daddy was directing his chorus at their contest this weekend. He said that I looked the same as I did when I was a student. He didn't mention the watermelon that I seemed to be carrying under my dress. But that felt pretty good to hear, considering that I was 20 years old the last time he saw me.
The director of the wind ensemble was also glad to see me and asked about Musical Daddy and The Boy. His wife is a colleague of mine (or was, anyway, and hopefully will be again) and a friend, and it was nice to see her and another colleague that evening and talk about music stuff and school stuff and think about things that normal people do.
I was glad to get informed, anyway, about some positive and some negative things that have been going on in our school and our district.
I woke up every few minutes starting at about 6:30 because I have been so accustomed to getting up that early...but I really wanted to stay in bed longer. Finally I dragged my tired self out of bed and into the shower at 7:30. I stopped at the store to pick up more grape juice and some ginger ale, along with a few other items, and I arrived at the hospital around 9:00.
Grandma said that The Boy had a good night. He was up at 6:30--maybe he was channeling me so that I'd wake up with him, even though I wasn't there. Who knows. I don't yet know how his blood pressure has been. I should have thought to ask.
Currently, he is taking 5 mg of Vasotech in the morning, and 2.5 mg of Norvasc in the morning and at night. He tolerated my giving it to him in grape juice--I put a bit in the cup and he drank from the cup. The nurse wanted him to get more of it, though, so I had to put the rest in a syringe with the juice, which he wasn't crazy about, but grape juice hides icky flavors pretty darned well.
No big plans for today other than to hang out with Grandma and The Boy. He is very snuggly and sweet.
Friday, May 1, 2009
Enter Grandma
and everything gets better. At least a little bit.
When she arrived, The Boy was asleep. He woke up, they read a cute pop-up book that she brought, and he sat in his chair to eat Rice Krispies and some various fruit snacks. Also from Grandma. And cheese. Which he is excited about currently.
Still don't know exactly why he's feeling crappy but he seems better.
When she arrived, The Boy was asleep. He woke up, they read a cute pop-up book that she brought, and he sat in his chair to eat Rice Krispies and some various fruit snacks. Also from Grandma. And cheese. Which he is excited about currently.
Still don't know exactly why he's feeling crappy but he seems better.
Also, needs blood
The Boy needs blood today, again. That's pretty unusual, and hasn't happened before, that he would need blood this long after his last chemo treatment. That said, his levels were not super a few days ago. Now they are just below the cutoff. Still waiting on the Zofran. The oncologist just stopped in. As usual, The Boy didn't say goodbye to her, because his tendency is to say goodbye to her only when he is going home.
Not Hungry
The Boy just isn't hungry. And that doesn't happen. He did eat about 1/3 of a rice cake with honey and some juice. When his actual breakfast arrived and I got a bit ready for him, he gagged a bit and turned away. He had no interest in yogurt, meaning that the best method of delivering crushed pills is out the window. I asked the nurse to get him some Zofran, because maybe he's just feeling a little nauseous for one reason or another and the Zofran will take that away so that he can eat.
And the nephrologist just sent in another dose of medicine, which I haven't yet tried to give him, because he won't eat, and if I force it, it will come back up.
I wonder if the new BP medicine, Vasotech, is causing him to lose his appetite. He was fine yesterday, though--he took it around lunchtime. Now she wants double the dose, but in the morning. Or the few doses of Pro-Cardia that he had after some high BP's.
Or, if he is getting sick with something else that he picked up while here in the hospital. If that's the case, then I'm going to be REALLY mad. But there's not a thing that I can do about it.
So since there's nothing to be done about any of this except to wait for the Zofran and hope that it works...that's what I'm going to do.
And the nephrologist just sent in another dose of medicine, which I haven't yet tried to give him, because he won't eat, and if I force it, it will come back up.
I wonder if the new BP medicine, Vasotech, is causing him to lose his appetite. He was fine yesterday, though--he took it around lunchtime. Now she wants double the dose, but in the morning. Or the few doses of Pro-Cardia that he had after some high BP's.
Or, if he is getting sick with something else that he picked up while here in the hospital. If that's the case, then I'm going to be REALLY mad. But there's not a thing that I can do about it.
So since there's nothing to be done about any of this except to wait for the Zofran and hope that it works...that's what I'm going to do.
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