This afternoon, we had a nice long sit-down with The Boy's oncologist to go over all of the components of our next new normal.
He reiterated that the doctor who had conducted the studies with the original regimens that The Boy had been on--both the initial DD4A regimen and the Stratum-C relapse protocol--saw no major differences among kids who completed only some of the protocol vs those who completed more vs those who were able to finish. What The Boy's doc told us this time that didn't come up last time is that this same doctor is now studying late effects and follow-up, so he is REALLY the guy who confirms that we're doing the right thing by stopping treatment.
In terms of other cancers, or the same type of cancer: If The Boy were to suffer a Wilms relapse, they would have an additional plan of action for him. I don't know what it is, but the doctor said that there is a next step in place. We'd be even in less of a bind than we would have been a few months ago had the spot on his liver actually been cancer. As for secondary malignancies from either the chemo drugs or the radiation, the doctor reassured us that The Boy has only a slightly greater chance than the general population of experiencing that. It isn't as though we are waiting for it, knowing that it will happen. He said that it probably won't.
The immediate follow-up items on the agenda are as follows: Pentamidine this week (that is the IV antibiotic that he gets every month or so). Schedule a CT Scan for this week or next, depending on when they can fit us in. Get an appointment at the renal clinic. Probably do another GFR.
The kidney function is still a very interesting piece. The next GFR could reveal that his function has gone down. Or up. Or stayed about the same. We wouldn't be surprised by any of those things. We have to have The Boy followed by that team very closely, as those issues have not magically disappeared.
More long range follow-up items: The Boy will get a second CT scan about 3 months after the first. Following that, he will have ultrasounds and probably X-rays for his followup scans and a CT only if something looks suspicious. The deal with the CT scan is that it exposes the patient to radiation, much more than X-rays, and there have recently been rumblings about not wanting to expose children to too much of this if possible, so I'm sure that's why we're going to ultrasound so soon.
He will still see the oncologist about every month for awhile. The port will stay in through his CT scan, and if the scan is clear, the port will be removed. Until the port is removed, pretty much every medical issue that The Boy may have will still go through oncology. We'll start to call his primary care physician for things as The Boy gets further away from the port removal.
As for The Boy's vaccinations, and Meatball's as well--we wait. The ones that Meatball has already gotten were not live virus vaccines. The ones coming up are. And The Boy has never had those vaccines. Likely, the kids will be on the same vaccine schedule, as they currently have had the same ones.
Medications--we're down to Enalapril and Sodium Bicarbonate. We don't give Zofran anymore (although I will give it before he gets Pentamidine because I've heard that it makes the kids nauseous), and he never needs Isradipine. We just took Pepcid off the list, although I don't want to get rid of it right away. My mother said that her acid problems got worse after chemo and she still takes something for it, so I'd like to keep the Pepcid around should The Boy need it.
He is allowed to swim. He can eat whatever he wants (although more caution should be taken with sodium and potassium). He can play with kids. In the Fall, we could both go to work. Not sure if we both will, at least not full-time, particularly if we don't get anything good.
We have to get used to saying that The Boy HAD cancer. We're hoping that he doesn't have it anymore. He is OFF treatment.
Monday, April 12, 2010
Tuesday, April 6, 2010
Pants memory
This past weekend, I took out a bin of summer clothing. I know that I had trimmed this stash down quite a bit after last year, removing things that I've had since I was 21 (or longer) that just didn't seem appropriate for me to wear anymore. I do have a nice collection of crop pants and shorts, and the weather has been so lovely over the past few days that I've been able to wear my summer stuff already.
I actually wore a few different things today--some shorts during the day with the kids (although we slept most of the day because I was tired and I think they're growing), a skirt for going out to dinner post-Passover, and a pair of light khaki crop pants with all kinds of buckles on them for orchestra rehearsal, figuring that neither the skirt nor the shorts were really quite right.
These pants are significant. I think that they either belonged to my mother first or she got them for me, but I started wearing them in 2008. On the right leg, faded into obscurity but still visible if you know where to look, are bloodstains. The blood belongs to The Boy.
June 25th, 2008. We were in the hospital. The night before, we had been admitted because The Boy was to get checked out for possible kidney cancer. Among the exciting things that happened was the event with the resident trying to place an IV in his hand OVER AND OVER again...then calling the IV team only to have them place it in his right hand, taking away his sucking thumb. It was truly a miserable night. At least I was able to nurse him and sooth him to sleep, somewhat. He had a CT scan the following morning, and we were leaving the hospital room after that to go for a walk, maybe to the playroom. All of sudden I saw blood. Little drops. On my pants and on my white shoes (I have since worn out those shoes). There was a problem with the peripheral IV, and it needed to be adjusted. While they did that, I asked if they could free his right thumb. He ended up not finding it until several days after his surgery, but it was a triumphant photo that I took nonetheless.
I don't know why I didn't just get rid of these pants. At this point, they are perfectly fine for wearing in public, as you can only see the blood drops if you look closely. And besides, moms get random oddities on their pants all the time.
Allow me to wax poetic: every time I wear them and see the spots, it takes me back to the hospital in New Jersey. To room 4224. And the Special Care unit, where we spent SO much time. But specifically, to that time in our lives when we understood that nothing was ever going to be the same. Now, even though these pants look mostly normal, the spots remain, as a metaphor for pediatric cancer having forever changed us.
I actually wore a few different things today--some shorts during the day with the kids (although we slept most of the day because I was tired and I think they're growing), a skirt for going out to dinner post-Passover, and a pair of light khaki crop pants with all kinds of buckles on them for orchestra rehearsal, figuring that neither the skirt nor the shorts were really quite right.
These pants are significant. I think that they either belonged to my mother first or she got them for me, but I started wearing them in 2008. On the right leg, faded into obscurity but still visible if you know where to look, are bloodstains. The blood belongs to The Boy.
June 25th, 2008. We were in the hospital. The night before, we had been admitted because The Boy was to get checked out for possible kidney cancer. Among the exciting things that happened was the event with the resident trying to place an IV in his hand OVER AND OVER again...then calling the IV team only to have them place it in his right hand, taking away his sucking thumb. It was truly a miserable night. At least I was able to nurse him and sooth him to sleep, somewhat. He had a CT scan the following morning, and we were leaving the hospital room after that to go for a walk, maybe to the playroom. All of sudden I saw blood. Little drops. On my pants and on my white shoes (I have since worn out those shoes). There was a problem with the peripheral IV, and it needed to be adjusted. While they did that, I asked if they could free his right thumb. He ended up not finding it until several days after his surgery, but it was a triumphant photo that I took nonetheless.
I don't know why I didn't just get rid of these pants. At this point, they are perfectly fine for wearing in public, as you can only see the blood drops if you look closely. And besides, moms get random oddities on their pants all the time.
Allow me to wax poetic: every time I wear them and see the spots, it takes me back to the hospital in New Jersey. To room 4224. And the Special Care unit, where we spent SO much time. But specifically, to that time in our lives when we understood that nothing was ever going to be the same. Now, even though these pants look mostly normal, the spots remain, as a metaphor for pediatric cancer having forever changed us.
Monday, April 5, 2010
Singing...
The Boy has started to sing. Just a little bit. He had been reciting some songs in rhythm; now he has begun to differentiate between high and low sounds. Also, he will sing in the same register that I do (assuming that I pick a decent register for him).
I'm excited. Particularly since he is unlikely to receive further medication that will damage his hearing.
Today wasn't a very interesting day. I was exhausted. The past two nights, The Boy has been waking up angry multiple times throughout the night. He hasn't had a fever. Right now he has a bit of a temperature but nothing major, and both boys have had little runny noses. Unfortunate, but normal. But the whole waking up every hour, angry, isn't good. He is distressed by his wet diapers at night (but doesn't seem to care during the day at all) and insists on a change.
Meatball has been sleeping through most nights and going to bed at night and for naps with little issue, although lately he has been more likely to cry a bit when he is put to bed. Last night he got up at 4 AM. Not a big deal except that having been woken at 1, 2, and 3 by The Boy, a 4 AM Meatball waking adds insult to injury.
Anyhow, despite my somewhat zombified state today, we did have fun. The boys played outside, and they even got a new playhouse today!
Hopefully tomorrow we'll get out and do something else...and perhaps I can get a handle on the constant mess!
I'm excited. Particularly since he is unlikely to receive further medication that will damage his hearing.
Today wasn't a very interesting day. I was exhausted. The past two nights, The Boy has been waking up angry multiple times throughout the night. He hasn't had a fever. Right now he has a bit of a temperature but nothing major, and both boys have had little runny noses. Unfortunate, but normal. But the whole waking up every hour, angry, isn't good. He is distressed by his wet diapers at night (but doesn't seem to care during the day at all) and insists on a change.
Meatball has been sleeping through most nights and going to bed at night and for naps with little issue, although lately he has been more likely to cry a bit when he is put to bed. Last night he got up at 4 AM. Not a big deal except that having been woken at 1, 2, and 3 by The Boy, a 4 AM Meatball waking adds insult to injury.
Anyhow, despite my somewhat zombified state today, we did have fun. The boys played outside, and they even got a new playhouse today!
Hopefully tomorrow we'll get out and do something else...and perhaps I can get a handle on the constant mess!
Friday, April 2, 2010
Done? Done.
GFR of 44 yesterday was the final straw that caused The Boy's doctor to call off the dogs.
Previous concerns, as I have mentioned, were the kidney function (as measured by creatinine levels, GFR tests, and blood pressure) and the recovery of his blood counts in a reasonable amount of time. I had also elaborated on the doctors' concerns and our concerns about weighing the effectiveness of the chemotherapy drugs in keeping cancer from coming back versus the harshness of the medications and the collateral damage to our little boy.
Although we had expressed this concern to The Boy's doctor, feeling free to do so once he brought up the idea of treatment not going the whole way, we feel comfortable knowing that it was the doctor's decision and one that he made after consulting with other doctors.
Kidney transplant is still, most likely, in our future. Who knows when?
We have already received a lot of positive feedback from friends and family about what remarkable news this is, that The Boy is done with chemo. While we are glad about that, and the chance for us to live our lives and for him to be a "normal" little boy in short order, it isn't all good news. It doesn't escape us that the reason for discontinuing treatment is that his kidney has been so damaged. It also doesn't escape us that he has just as much chance of being cured completely as he has of requiring more treatment later on, either for Wilms recurrence or a secondary cancer. So if we aren't jumping for joy when we receive a happy message, please understand, it's not you. And it's not your fault if you don't know what to say, because we don't know either.
As we have expected to be forgiven (and sometimes have not been, by those who should have cared the most), we will forgive anyone who asks the "wrong" question or says the "wrong" thing if the intention was good. As we have not always been able to make time for family and friends, we plan to incorporate that lesson into the rest of our lives in allowing others the flexibility that has been a necessity for us.
I still have visions and memories of horrible things. I have visions of the family fallout brought on by The Boy's illness and Meatball's arrival (really, that it brought out things that were already there, and revealed people for who they really were). I don't know if I'll ever recover from that. Musical Daddy had a similar experience regarding something else in his life, where all of a sudden he started thinking about it again and couldn't sleep and felt angry all over...that's how I feel about a lot of these issues that started awhile ago, escalated when The Boy was sick, and came to a head when Meatball was born. And every time something comes up that relates to it, I'm taken back to that time. It's why "forgiveness" is so difficult, particularly when no one thinks that they need forgiveness or that anything was done to hurt me. I'll never get back what was supposed to be a pleasant beginning of life for Meatball. It seems as though no one wanted him and no one wanted to be around him, and that he was my problem that interfered with everything, including care of The Boy. It was these crushing feelings that stopped me from getting real help with him and suffering through two months of tongue tie. And having him suffer, and cry all the time, and be miserable. Somehow I thought that I deserved it and that people who didn't like the way that I live my life and raise my children, particularly that I nurse my children, wished pain and suffering upon me, and that it worked. Mostly the delusions of a still-hormonal mom of a newborn. And it just kept going and going, the fighting, the back-and-forth...and all that Musical Daddy and I wanted to do was to take care of our children.
Okay. Enough.
The point is that, slowly, we will start to get some sort of life back. What we had is gone. We left the house that we had. Left the state. Left those doctors and nurses and that hospital. Left jobs, of course.
Now, we start over. We didn't think that we needed to, but as long as we have to, we may as well do it right.
Previous concerns, as I have mentioned, were the kidney function (as measured by creatinine levels, GFR tests, and blood pressure) and the recovery of his blood counts in a reasonable amount of time. I had also elaborated on the doctors' concerns and our concerns about weighing the effectiveness of the chemotherapy drugs in keeping cancer from coming back versus the harshness of the medications and the collateral damage to our little boy.
Although we had expressed this concern to The Boy's doctor, feeling free to do so once he brought up the idea of treatment not going the whole way, we feel comfortable knowing that it was the doctor's decision and one that he made after consulting with other doctors.
Kidney transplant is still, most likely, in our future. Who knows when?
We have already received a lot of positive feedback from friends and family about what remarkable news this is, that The Boy is done with chemo. While we are glad about that, and the chance for us to live our lives and for him to be a "normal" little boy in short order, it isn't all good news. It doesn't escape us that the reason for discontinuing treatment is that his kidney has been so damaged. It also doesn't escape us that he has just as much chance of being cured completely as he has of requiring more treatment later on, either for Wilms recurrence or a secondary cancer. So if we aren't jumping for joy when we receive a happy message, please understand, it's not you. And it's not your fault if you don't know what to say, because we don't know either.
As we have expected to be forgiven (and sometimes have not been, by those who should have cared the most), we will forgive anyone who asks the "wrong" question or says the "wrong" thing if the intention was good. As we have not always been able to make time for family and friends, we plan to incorporate that lesson into the rest of our lives in allowing others the flexibility that has been a necessity for us.
I still have visions and memories of horrible things. I have visions of the family fallout brought on by The Boy's illness and Meatball's arrival (really, that it brought out things that were already there, and revealed people for who they really were). I don't know if I'll ever recover from that. Musical Daddy had a similar experience regarding something else in his life, where all of a sudden he started thinking about it again and couldn't sleep and felt angry all over...that's how I feel about a lot of these issues that started awhile ago, escalated when The Boy was sick, and came to a head when Meatball was born. And every time something comes up that relates to it, I'm taken back to that time. It's why "forgiveness" is so difficult, particularly when no one thinks that they need forgiveness or that anything was done to hurt me. I'll never get back what was supposed to be a pleasant beginning of life for Meatball. It seems as though no one wanted him and no one wanted to be around him, and that he was my problem that interfered with everything, including care of The Boy. It was these crushing feelings that stopped me from getting real help with him and suffering through two months of tongue tie. And having him suffer, and cry all the time, and be miserable. Somehow I thought that I deserved it and that people who didn't like the way that I live my life and raise my children, particularly that I nurse my children, wished pain and suffering upon me, and that it worked. Mostly the delusions of a still-hormonal mom of a newborn. And it just kept going and going, the fighting, the back-and-forth...and all that Musical Daddy and I wanted to do was to take care of our children.
Okay. Enough.
The point is that, slowly, we will start to get some sort of life back. What we had is gone. We left the house that we had. Left the state. Left those doctors and nurses and that hospital. Left jobs, of course.
Now, we start over. We didn't think that we needed to, but as long as we have to, we may as well do it right.
Thursday, April 1, 2010
Done.
No more chemo. He's coming home now. That's it--the doctor doesn't want to give him any more.
He is fine and has a perfectly good chance of being "cured."
More info to follow.
He is fine and has a perfectly good chance of being "cured."
More info to follow.
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