Hi, Mark! Recently you wrote in a message to Ardith Hinton:

That part hasn't changed, apparently. Her treatment lasted
for 2 1/2 years... but I was also told it took 3 1/2 years
for boys.

Basically the same, but depending on certain test results,
the treatment times in the Maintenance Phase can be less.

Ah. I guess there's more flexibility now that the doctors have been using +/- the same protocols for over twenty years. In our day the time frame was quite rigid AFAIK, but since then they've fine-tuned a lot of things. :-)



[re prednisone]

He was on the steroid for the first 29 days in a row. In
addition to all the things you noted, he also was eating
like crazy.

Our daughter didn't feel much like eating during the first few weeks ... she survived chiefly on milk, juice, and formula. While I was in hospital with her nothing went to waste, though. Fortunately she would leave enough on her plate to enable me to keep body & soul together until Dallas arrived after work. I understand prednisone does tend to cause food cravings, typically for salty foods &/or carbohydrates. Maybe our daughter's cravings were different. In any case I was surprised... and rather amused... when I found out that some local pizza restaurants cheerfully made deliveries to the hospital. Teenagers are more likely to be there on their own than younger children, of course, and more likely to have independent means by which to pay for such luxuries. :-))

This then means going to the bathroom like crazy and he
ended up with a rash that wouldn't heal until he was off
the steroid.

Uh... you mean something akin to diaper rash? We had a very similar problem during the third week, in part because of the stool softener which was routinely administered during treatment to keep things moving along. It was a difficult time for us. But I gather the alternatives could be worse... you do *not* want caustic chemicals eroding your child's innards, where you can't see what's going on & where the damage would be a lot more difficult to fix.

Because prednisone inhibits the immune response, it is often used in the treatment of arthritis & asthma as well as leukemia. The downside in such situations as yours, however, is that it slows the healing of wounds.

What you gain on the swings you lose on the roundabouts, or so it is said. Our daughter had a stubborn case of "cradle cap" which disappeared when she lost her hair. Glad to know the rash has cleared up, at any rate.... :-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

Because prednisone inhibits the immune response, it is often used
in the treatment of arthritis & asthma as well as leukemia. The downside
in such situations as yours, however, is that it slows the healing of wounds.
What you gain on the swings you lose on the roundabouts, or so it
is said. Our daughter had a stubborn case of "cradle cap" which
disappeared when she lost her hair. Glad to know the rash has cleared up, at any rate.... :-)

We are about to enter the "Delayed Intensification" phase next week. Not going
to be fun, but we will be done with the bulk of the treatments in mid November.
Greatly looking forward to that.

There seems to be more treatments on this phase and it also adds meds that he has not had up until this point.

His counts last week were totally normal, which is very impressive considering the treatment going on.

- Mark

--- WWIVToss v.1.50
* Origin: http://www.weather-station.org * Bel Air, MD -USA (1:261/1304.0)

Hi again, Mark! My apologies for taking so long to finish this chapter:

[He] is on the "Standard Risk B-ALL". There is Induction,
Consolidation, Interim Maintenance I, Delayed Intensification,
Interim Maintenance II, and then Maintenance.

Yes, "Delayed Intensification" sounds familiar. I had forgotten the terminology because it's been awhile. If that's where you get dexa(metha)sone instead of prednisone... the food cravings really kicked in there as far as we were concerned! Our daughter was constantly hungry but had little interest in anything except milk, pork chops, and nine-grain bread with strawberry jam. I remember thinking to myself "Well, it's a balanced diet... sort of... and it's just for two weeks." The net result was that she was the only kid in the ward who didn't seem to need a zinc supplement. (Details on request.) My point is that even a kid who's supposedly mentally handicapped may know more that we do at times because we're not wearing their body, or taking the same drugs. :-))

It sounded to me as if he might be getting more treatment in
the hospital, and less at home, than our daughter did. But I
remember one phase in which we had to go to the hospital every
day for a week or two.

We were going to the hospital once every 7 days. Right now,
it is once every 10 days. It varies - and there is a part where
it is every day for 4 days in a row - two weeks in a row.

That's the part I was thinking of. Maybe it was five days in a row, but it was certainly more than four. I remember going to the ward on weekends for injections of something or other because the clinic wasn't open. In those days the timing was very strict... if you were due to start something xxx days after the onset of treatment, that's what you did. Thus I took the liberty of assuming, since our uplink's system was down for a few days & I didn't want to lead the witness, that "next week" didn't necessarily mean "next Monday". ;-)

With umpteen different drugs, each on a different schedule, I was
the only living person who had the drill committed to memory. But
just in case something unexpectedly happened to me, the oncologist
& I kept meticulous records of how these things were supposed to
be done. :-))

I have all the CureSeach papers that plot out everything by day.

Cute... we weren't told what would happen in the next stage until we got there. It was thought at the time that parents would feel overwhelmed. I understand that because (with a kid who... thanks to the effects of prednisone ... was unable to sleep before 3:00 AM although the vampires made their rounds at 7:45) it took me a week to read the stack of papers explaining what parents must know before a kid would be discharged. And only then could I turn to the library book I'd brought with me... Bernie Siegel's LOVE, MEDICINE & MIRACLES! When I had to pack a hospital suitcase in a hurry I grabbed the first book off the pile on the window sill. I found it quite helpful at the time because the author is an oncologist who became interested in why some folks survive cancer while others don't. He encouraged me to go on doing what I was already doing, although other folks thought I was nuts. Bottom line is, my daughter survived leukemia at a time when the odds were a lot less favourable than they are now. And together the two of them inspired me to start this echo years ago.... :-)

Each week feels like a roller coaster. We go up (feel better) up
until treatment, and then it is back down.. Then back up again.

Sounds familiar. Hang in there.... :-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

folks thought I was nuts. Bottom line is, my daughter survived leukemia
at a time when the odds were a lot less favourable than they are now. And together the two of them inspired me to start this echo years ago.... :-)

It is great that you did and took the initiative to learn as much as possible on the subject. Not all parents do that. Our doctors have even pointed that out to us.

A good bit of the treatment is done at home with oral meds that are time sensitive, have to be taken without food, etc, things that as a parent, you need to be on top of.

I always want to know as much as possible about everything and how everything works. Having all the data from day one - on the entire treatment schedule was
very helpful to me.

BTW, we get a two week break from treatments and then start Interim Maintanence
II possibly next week if counts are good. That is the final phase before Maintanence, when things should start getting more normal.

- Mark

--- WWIVToss v.1.50
* Origin: http://www.weather-station.org * Bel Air, MD -USA (1:261/1304.0)

Hi, Mark! Recently you wrote in a message to Ardith Hinton:

Bottom line is, my daughter survived leukemia at a time
when the odds were a lot less favourable than they are now.
And together [she & Bernie Siegel] inspired me to start
this echo years ago.... :-)

It is great that you did and took the initiative to learn
as much as possible on the subject. Not all parents do
that. Our doctors have even pointed that out to us.

Yes, it seems to me that parents who do are able to work together with
doctors more effectively... and the good doctors appreciate it.

A good bit of the treatment is done at home with oral meds
that are time sensitive, have to be taken without food, etc,

things that as a parent, you need to be on top of.

Uh-huh. Oncology parents are a special breed, that's for sure! Years
ago I joked that the oncology ward was the only one where adults had to pass an
exam before their kids would be discharged. I was exaggerating, of course, but
not by much. When our daughter stayed briefly in another ward during treatment
I marched up to the nursing station at 11:00 AM, notebook in hand, to check her
blood counts... as I had grown accustomed to doing. In 3B I'd have had to wait
my turn, whereas in this ward it came as quite a surprise to the staff.... ;-)

I always want to know as much as possible about everything
and how everything works.

That's my reasoning style too. I was glad I asked "Why?" when a nurse
told me during the initial stages of treatment that band-aids should be removed
within 24 hours. (Germs like warm, dark, damp places. Okay... I get it.) One
of our roommates had to stay an extra two weeks because her mother did not make
any mental connection between band-aids & surgical dressings, so when the staff
improvised something with tape & gauze she waited for somebody to tell her what
to do. There again, a bit of initiative goes a long way.... :-)

BTW, we get a two week break from treatments and then
start Interim Maintanence II possibly next week if counts
are good. That is the final phase before Maintanence,
when things should start getting more normal.

I expect so. Thinking of you, even if I'm slow to reply.... :-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

I expect so. Thinking of you, even if I'm slow to reply.... :-)

Very thankful to be finished with Interim Maintenance II as of the Monday before Thanksgiving. It was a bit more challenging than I had thought.

We start Maintenance on December 12th. Starts of with some treatments, but at least after that, we are clear for 3 months (other than a daily oral med - and another weekly one).

Will be very happy to see him start to have a normal life again.

- Mark

--- WWIVToss v.1.50
* Origin: http://www.weather-station.org * Bel Air, MD -USA (1:261/1304.0)

Hi, Mark! Recently you wrote in a message to Ardith Hinton:

Very thankful to be finished with Interim Maintenance II
as of the Monday before Thanksgiving.

Ah. No doubt that's a great relief.... :-)

It was a bit more challenging than I had thought.

These things are always a bit more challenging than one expected. You
do your darndest to learn all you can about what might go wrong so you can spot
it right away & get help promptly if necessary, but... [wry grin].

We've had our share of problems which weren't in the textbooks either.
I see you're well equipped for the role of father to this child, however. As a
teacher I met others who worked with "special needs" children & then went on to
have one of their own whereas you worked in a hospital. It seems to me that we
prepared ourselves in advance even if we didn't realize it at the time.... :-)

We start Maintenance on December 12th. Starts of with some
treatments, but at least after that, we are clear for 3 months
(other than a daily oral med - and another weekly one).

Will be very happy to see him start to have a normal life again.

Yes... whatever "normal" is (Hinton family/oncology parent joke). ;-)

IIRC that is the stage where you no longer have to wait in the parking
lot (& fend off little old ladies with lap dogs who want to lick the kid's face
while they assure you they know all about immune suppression, because they have
the same problem) when your wife is shopping for groceries. Although it's true
that the immune system tends to be somewhat less efficient beyond middle age it
is a far cry from being told to avoid crowds & various ill-informed individuals
when the neutrophil count is below 1000 or what have you... [wry grin].

Anyway, I hear you. Looking back... I gather you got this surprise on
April Fool's Day. I could tell you the exact date & time we got it too. But I
think what matters is that while you may not be out of the woods yet things are
looking up. In my experience most kids achieve remission within days. Not all
are able to maintain it, but the longer you & your loved ones hang in there the
better the chances are that it will be ancient history in a decade or two. :-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

Anyway, I hear you. Looking back... I gather you got this surprise
on April Fool's Day. I could tell you the exact date & time we got it
too. But I think what matters is that while you may not be out of the
woods yet things are looking up. In my experience most kids achieve remission within days. Not all are able to maintain it, but the longer
you & your loved ones hang in there the better the chances are that it
will be ancient history in a decade or two. :-)

Things have started to return to normal over here. I'm still getting used to going back to our old "normal".

The Maintenance Phase lasts until around June of 2016. Mostly just oral meds, but nothing that strong to make him sick. All his hair is growing back already, too.

It was a crazy year last year, but I'm glad we keep moving in the right direction.

- Mark

--- WWIVToss v.1.50
* Origin: http://www.weather-station.org * Bel Air, MD -USA (1:261/1304.0)

Hi, Mark! Awhile ago you wrote in a message to Ardith Hinton:

Things have started to return to normal over here. I'm
still getting used to going back to our old "normal".

I hear you. Whatever "normal" is to others, it's what works for you when your usual routines aren't disrupted by heavy-duty chemo & suchlike. :-)

The Maintenance Phase lasts until around June of 2016. Mostly

just oral meds, but nothing that strong to make him sick.

[Chorus: Hallelujah!] :-))

All his hair is growing back already, too.

Now that you mention it, our daughter was just entering preschool at the time her hair started growing back. I'd been warned that other kids might tease her... but I suspect that's more of a problem with age 10+. The problem from her standpoint was that kids of +/- her own age wanted to feel her "chemo cut" with their fingers because they had never seen anything like it. At that age they just do it, of course, without requesting permission... [wry grin].

From my standpoint she looked as cute as a bug's ear, and some women Dallas & I knew were paying $100... twenty-five years ago... for haircuts like that. What's currently fashionable in suburbia &/or on Snob Hill takes awhile to trickle down to the common masses in Vancouver. I found it rather amusing, however, when our daughter achieved the same results as a side effect.... ;-)

It was a crazy year last year, but I'm glad we keep moving
in the right direction.

You said a mouthful there! Anyway, I'm glad for you too.... :-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

From my standpoint she looked as cute as a bug's ear, and some
women Dallas & I knew were paying $100... twenty-five years ago... for haircuts like that. What's currently fashionable in suburbia &/or on Snob Hill takes awhile to trickle down to the common masses in Vancouver. I found it rather amusing, however, when our daughter achieved the same results as a side effect.... ;-)

Same here. His hair looks really trendy with some areas spiking up, etc. Even
though things have no been easy by any stretch, I'm very pleased with how things are going.

The latest thing we found out yesterday, is he developed C. Diff (from an antibiotic treatment for a sinus infection). We just started on the Flagyl yesterday evening. Just one more medicine to give him multiple times a day.

Can't wait until we don't have to give him any medicines. He is so used to taking them, he doesn't remember not taking anything.

- Mark

--- WWIVToss v.1.50
* Origin: http://www.weather-station.org * Bel Air, MD -USA (1:261/1304.0)

Hi, Mark! Awhile ago you wrote in a message to Ardith Hinton:

[re hair styles, voluntary or involuntary]

What's currently fashionable in Suburbia &/or on Snob Hill
takes awhile to trickle down to the common masses in Vancouver.
I found it rather amusing, however, when our daughter achieved
the same results as a side effect.... ;-)

Same here. His hair looks really trendy with some areas spiking
up, etc.

I can well imagine because our daughter has a cowlick like that... [chuckle]. Spiky hair does seem to be "in" these days for boys & young men at least. Dallas & I also know men ranging in age from thirty to eighty-plus who shave their heads because they hope they'll look younger if their male pattern baldness isn't as obvious as it might otherwise be. Either way, people accept more readily than they once did that another person may have an unconventional hairdo or no hair at all... and I see the same phenomenon with women too. :-)

Even though things have no been easy by any stretch,

Ah... a masterpiece in British understatement here, from a USAian! IMHO that is one of your strengths. Both of us have walked through the valley of the shadow of death & come out the other side. While you may not find many others who have a clue what you managed to pull off I do & I'm listening. :-)

I'm very pleased with how things are going.

Glad to hear it. Hang in there.... :-)

The latest thing we found out yesterday, is he developed C.
Diff (from an antibiotic treatment for a sinus infection).

Don't know that one...

We just started on the Flagyl yesterday evening.

... but I remember the name "Flagyl", because I used it many years ago. As I understand your son's situation we all have a gazillion bacteria in or on our bodies at at any given time no matter what we do. Some are friendly ... some aren't. As long as the population is balanced we don't get sick. If we tinker with the balance of nature by trying to kill certain bacteria and/or by trying to get rid of white blood cells which keep multiplying without doing anything useful, things do get out of balance sometimes. On one such occasion our daughter was hospitalized because the culprit was Staphylococcus epidermis ... which we all have on our skin & mucous membranes. Because it doesn't make other people sick, the doctor can't just write a prescription & send you home. The only remedy available at the time had to be administered by IV. I see why there may not be a lot of demand for it. It worked like a charm, though. :-)

Can't wait until we don't have to give him any medicines. He is
so used to taking them, he doesn't remember not taking anything.

I can relate. Initially I felt as if I was up the creek without a paddle... but I soon got over it, and our daughter is still alive & well. :-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

I can relate. Initially I felt as if I was up the creek without
a paddle... but I soon got over it, and our daughter is still alive &
well. :-)

There have been times I have gotten frustrated angry, but have always stayed focused, determined, and relentless on making sure we do what needs to be done to get him through this and back to normal life.

I need to get the exact date, but it will be in June of 2016 when we are completely finished and can resume normal life (which I forgot what it is like).

At least this year has been more of a management type of year vs the intensity of things we were going through the previous year.

- Mark

--- WWIVToss v.1.51
* Origin: http://www.weather-station.org * Bel Air, MD -USA (1:261/1304.0)