Finish cleaning out hametz (non-Passover food). This includes giving a bag of non-perishables to my father-in-law to take to the church where Musical Daddy used to sing.
Side note: with Easter also coming up, I do think about that church and how nice everyone was, and what a fun time I had singing with them.
Also to do: pack! The boys' stuff is packed, husband's is as well, mostly. I haven't started mine.
Any last items to buy or get rid of, my sister and I will handle.
Yes, my sister came to visit! Not the one who lives here. The one who lives in MD.
I want to leave in the evening; Daddy prefers to spend more time at home, leaving the following morning or afternoon. I can certainly understand; I just want the boys to have the best time. With The Boy not needing counts, we have the freedom to leave whenever.
Of course, we are still grateful to have him out of the hospital.
We had fun fun and more fun today!!! Lots of playing, and great meals for everyone.
Sunday, March 28, 2010
Friday, March 26, 2010
Going home!
The Boy is being discharged! Urine samples were normal. They think that he is fine and, obviously, we'll call again if he isn't.
Wahoo!
Very excited for Passover in Harrisburg!
Wahoo!
Very excited for Passover in Harrisburg!
Read the following statement two ways:
The statement is, "I was just going to do that."
First, read it as though you are in a good mood and in agreement with a request. Someone instructs you to do something relatively routine which you were just getting ready to do, but the request comes before you actually complete the task. You are non-confrontational and friendly.
"I was just going to do that."
Next, read it as though you are annoyed by the fact that you were on your way to do something and you felt nagged by the person requesting that you do it. Or, perhaps, you knew that you were supposed to do it, but forgot, and upon being reminded, you get upset about it.
"I was just going to do that."
Upon entering the 7th floor playroom, the assistant in there immediately reminded us to wash our hands. She was so quick to remind us that I hadn't had a chance to do it yet. I responded positively with the first inflection of the statement (see above). I feel better about this playroom because of that. Hopefully that policy prevails all the time and throughout the hospital. I have a feeling that it does! Thus, I feel better about The Boy spending time in the playrooms.
The Boy is doing well today. One of the oncologists examined him and noticed that there was a healed-up sore which might have been causing his pee problems. His most recent urine test was fine. There was an amount of protein in the urine that was around the normal limits.
He is off the fluids. He is eating and drinking with no problem. They want to see how he does without the fluids and, assuming that everything else is okay, they may go ahead and discharge him tomorrow!!
Oh, and I forgot to mention: when his primary oncologist came in to see him at the clinic yesterday, The Boy said, loud and clear, "Hi, Dr. Graves!" It was adorable.
His former doctor would be very jealous. Sure, it's a developmental thing, but even so, it seemed as though he just knew, and then he would pick up the "going home" cues. The Boy would give her the cold shoulder until she'd tell him that it was time to go home. Then, perhaps, she'd get a bye-bye from him or he'd blow kisses.
One of the problems with being on a different floor is having a different nursing staff. Not a big deal, but we're still working on getting to know the staff on 9B.
Of course, The Boy is already kind of a big deal around here!
First, read it as though you are in a good mood and in agreement with a request. Someone instructs you to do something relatively routine which you were just getting ready to do, but the request comes before you actually complete the task. You are non-confrontational and friendly.
"I was just going to do that."
Next, read it as though you are annoyed by the fact that you were on your way to do something and you felt nagged by the person requesting that you do it. Or, perhaps, you knew that you were supposed to do it, but forgot, and upon being reminded, you get upset about it.
"I was just going to do that."
Upon entering the 7th floor playroom, the assistant in there immediately reminded us to wash our hands. She was so quick to remind us that I hadn't had a chance to do it yet. I responded positively with the first inflection of the statement (see above). I feel better about this playroom because of that. Hopefully that policy prevails all the time and throughout the hospital. I have a feeling that it does! Thus, I feel better about The Boy spending time in the playrooms.
The Boy is doing well today. One of the oncologists examined him and noticed that there was a healed-up sore which might have been causing his pee problems. His most recent urine test was fine. There was an amount of protein in the urine that was around the normal limits.
He is off the fluids. He is eating and drinking with no problem. They want to see how he does without the fluids and, assuming that everything else is okay, they may go ahead and discharge him tomorrow!!
Oh, and I forgot to mention: when his primary oncologist came in to see him at the clinic yesterday, The Boy said, loud and clear, "Hi, Dr. Graves!" It was adorable.
His former doctor would be very jealous. Sure, it's a developmental thing, but even so, it seemed as though he just knew, and then he would pick up the "going home" cues. The Boy would give her the cold shoulder until she'd tell him that it was time to go home. Then, perhaps, she'd get a bye-bye from him or he'd blow kisses.
One of the problems with being on a different floor is having a different nursing staff. Not a big deal, but we're still working on getting to know the staff on 9B.
Of course, The Boy is already kind of a big deal around here!
Thursday, March 25, 2010
Not sure what to think about this admission
So the way that this all went down was as follows (a warning that this is a graphic medical description):
The Boy needed to go to the lab for his bloodwork instead of having the nurse come, because of the cold agglutinin. We knew that. It was in the plans.
I had also mentioned that The Boy had been suffering from diarrhea. We quickly ceased giving him milk to drink. No more "pink milk" for him (he had strawberry milk one time, so we bought strawberry syrup and mixed in a few drops). And no more Eat n Park milkshakes (he's only had one)...sigh...
Naturally, with diarrhea comes rashes, and when things didn't look right, we thought that it was as a result of the poo. Everything comes down to poo.
Sitting in the clinic office was when, upon indicating that there was a bleeding issue, that The Boy demonstrated what the problem was by oozing blood from his urethra. Generally speaking, that's not a good thing. They wanted to put a bag on for urine collection and I thought, fabulous, we'll be here all day. His previous diaper was dry, so we lucked out and got the urine sample in a matter of minutes.
Of course, the way I was able to tell that he had gone was the painful vocalization as he went, confirming that poo isn't really the problem.
As I was about to explain everything above in the previous blog entry, they came in to tell us that The Boy was being admitted.
So, as things stand, The Boy is having a terribly painful time with urination. We are unclear as to what is actually wrong, but they are running tests (naturally). Suspected causes of this problem are as follows:
A rash that has dried and cracked. Some poo caused an infection in there. Some other form of urinary tract infection. Kidney stones. Bladder bleeding from the Cyclophosphamide.
We don't know, and we won't know for at least a little bit.
my plans to attend my aunt's wedding are no more. Should The Boy actually be discharged in time, we'll still go to Harrisburg for Passover.
The Boy needed to go to the lab for his bloodwork instead of having the nurse come, because of the cold agglutinin. We knew that. It was in the plans.
I had also mentioned that The Boy had been suffering from diarrhea. We quickly ceased giving him milk to drink. No more "pink milk" for him (he had strawberry milk one time, so we bought strawberry syrup and mixed in a few drops). And no more Eat n Park milkshakes (he's only had one)...sigh...
Naturally, with diarrhea comes rashes, and when things didn't look right, we thought that it was as a result of the poo. Everything comes down to poo.
Sitting in the clinic office was when, upon indicating that there was a bleeding issue, that The Boy demonstrated what the problem was by oozing blood from his urethra. Generally speaking, that's not a good thing. They wanted to put a bag on for urine collection and I thought, fabulous, we'll be here all day. His previous diaper was dry, so we lucked out and got the urine sample in a matter of minutes.
Of course, the way I was able to tell that he had gone was the painful vocalization as he went, confirming that poo isn't really the problem.
As I was about to explain everything above in the previous blog entry, they came in to tell us that The Boy was being admitted.
So, as things stand, The Boy is having a terribly painful time with urination. We are unclear as to what is actually wrong, but they are running tests (naturally). Suspected causes of this problem are as follows:
A rash that has dried and cracked. Some poo caused an infection in there. Some other form of urinary tract infection. Kidney stones. Bladder bleeding from the Cyclophosphamide.
We don't know, and we won't know for at least a little bit.
my plans to attend my aunt's wedding are no more. Should The Boy actually be discharged in time, we'll still go to Harrisburg for Passover.
bodily function suspicions
Bad mommy: I tried to get The Boy to drink cow's milk just because WIC gives us a whole bunch of it and we didn't get anything signed yet for him to drink something else.
Working backwards: The Boy is being admitted. He has bleeding which might be from his bladder.
More updates later.
Working backwards: The Boy is being admitted. He has bleeding which might be from his bladder.
More updates later.
Monday, March 22, 2010
For naught
We went to the clinic today for Flashes of Hope photos and what we thought would be a pre-admission checkup. We put the boys in suits. They looked adorable. The photos didn't work out so well, because The Boy was tired and Meatball wasn't so in the mood. Timing is everything.
We then learned that The Boy's appointment today was supposed to be cancelled and that they weren't even going to try admitting him. Thinking about it, any consternation at the thought of not being admitted soon enough comes from our experiences in New Jersey, where so much more depending on staying on schedule. The doctor apologized for not letting us know about that.
Nevertheless, since we were there, he talked to us about what had been going on with the oddities in the lab. It wasn't the fault of the nurse who drew the blood, nor was it her equipment, and neither was it a problem with the lab itself. Instead, it is an issue with cold agglutinins in his blood. The doctor said that while this isn't terribly common, he produced this as a result of having some sort of infection. He didn't have anything serious, because we didn't notice it except for some runny-nosed-ness. But even so, it caused antibodies to be produced that cause his blood to congeal at room temperature.
Fun.
Thursday, we go back to the clinic for his next count check. They can check for cold agglutinins as they test his blood.
Wednesday is the blood drive. Now, The Boy will be able to make appearances.
Friday, we leave for Philadelphia. My aunt is getting married. The Boy was supposed to stay back for counts; now we don't know what we're doing. From there, we're going to Harrisburg for Passover.
Chemo is now scheduled to start right after the Passover seders.
We then learned that The Boy's appointment today was supposed to be cancelled and that they weren't even going to try admitting him. Thinking about it, any consternation at the thought of not being admitted soon enough comes from our experiences in New Jersey, where so much more depending on staying on schedule. The doctor apologized for not letting us know about that.
Nevertheless, since we were there, he talked to us about what had been going on with the oddities in the lab. It wasn't the fault of the nurse who drew the blood, nor was it her equipment, and neither was it a problem with the lab itself. Instead, it is an issue with cold agglutinins in his blood. The doctor said that while this isn't terribly common, he produced this as a result of having some sort of infection. He didn't have anything serious, because we didn't notice it except for some runny-nosed-ness. But even so, it caused antibodies to be produced that cause his blood to congeal at room temperature.
Fun.
Thursday, we go back to the clinic for his next count check. They can check for cold agglutinins as they test his blood.
Wednesday is the blood drive. Now, The Boy will be able to make appearances.
Friday, we leave for Philadelphia. My aunt is getting married. The Boy was supposed to stay back for counts; now we don't know what we're doing. From there, we're going to Harrisburg for Passover.
Chemo is now scheduled to start right after the Passover seders.
Saturday, March 20, 2010
Big "ifs" and big things
Yesterday's lab visit revealed that The Boy needed reds and platelets, so it was back to the hospital for him and Grandma.
From our previous experiences, The Boy was usually NOT up to 100,000 platelets 3 days after being so low as to need a transfusion. But then again, who knows--he has doubled his platelet count in a day before (although going from 30 to 60 isn't THAT impressive).
As we have said, his oncologist is watching this whole process very closely. Because The Boy has received only half of his doses this past cycle, and less than that for the one before, the oncologist is suspicious about his ability to both tolerate and benefit from much more of the treatment. On the other hand, if The Boy does recover in time to start chemo #18 on Monday, then we talk about upping the dosage.
The kidney is a factor, of course, and an additional GFR will reveal what the trend actually is with regards to kidney function.
In other news, much more exciting news, the swingset is here! Last week, our friend Dave, who is the contractor that did the work on this house after the fire (yes, remember that while we were starting relapse treatment for The Boy back in 2008, Grandma and Grandpa were putting their home back together after a nasty kitchen fire) drove to our old house to get the swingset. He put it up here at Grandma's house; The Boy hasn't seen it yet but will be excited, I'm sure! Dave reports that the new owners are nice people. He's retired military, just like Dave, so they had plenty to talk about.
Today should be a fun day. The weather is supposed to be nice.
I can't believe that it is almost 11:30.
From our previous experiences, The Boy was usually NOT up to 100,000 platelets 3 days after being so low as to need a transfusion. But then again, who knows--he has doubled his platelet count in a day before (although going from 30 to 60 isn't THAT impressive).
As we have said, his oncologist is watching this whole process very closely. Because The Boy has received only half of his doses this past cycle, and less than that for the one before, the oncologist is suspicious about his ability to both tolerate and benefit from much more of the treatment. On the other hand, if The Boy does recover in time to start chemo #18 on Monday, then we talk about upping the dosage.
The kidney is a factor, of course, and an additional GFR will reveal what the trend actually is with regards to kidney function.
In other news, much more exciting news, the swingset is here! Last week, our friend Dave, who is the contractor that did the work on this house after the fire (yes, remember that while we were starting relapse treatment for The Boy back in 2008, Grandma and Grandpa were putting their home back together after a nasty kitchen fire) drove to our old house to get the swingset. He put it up here at Grandma's house; The Boy hasn't seen it yet but will be excited, I'm sure! Dave reports that the new owners are nice people. He's retired military, just like Dave, so they had plenty to talk about.
Today should be a fun day. The weather is supposed to be nice.
I can't believe that it is almost 11:30.
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