This past year has been especially difficult with regards to medical related things with two of my kids.

First, we completed the long awaited Hirschsprung's corrective surgery. This involved multiple operations over a period of a few months. All went excellent and that has been completed.

Second, was my daughter's herniated disc back in March. That operation went great and that has been resolved.

Third, on April 1st, my son (still getting used to being Hirschsprung's free) was diagnosed was Leukemia (B-ALL). That was a huge shock to us - especially since he has already been through more medical procedures than many gown adults.

He has been responding great to the treatment and was in total remission on day 29. It is a long treatment plan - 7 months of typically, weekly treatments/visits. Followed by once every 12 weeks for several years in the maintenance phase.

Taking things day by day and week by week. There are good days and not so good ones, but overall things have been really good and heading in the right direction.

- Mark

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It sounds like it... you're doing great given everything you guys have
been through.

Fortunately, my work has been very understanding and flexible. I work for the same hospital where my son is being treated, so that helps.

I'm glad to hear this Mark... I hope you and the rest of your family have some time in the coming weeks to rest up and have some fun as well.

Been doing that this weekend. It has been awhile since we just sat back and relaxed for awhile.

While this is a long treatment, I just concentrate on the short term and making sure he continues heading in the right direction. Whatever it takes to make sure this doesn't come back.

Even though there are highs and lows in the treatment, he has made huge steps forward from when we first found out about his condition.

- Mark

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On 05-31-14, Mark Hofmann pondered and said...

This past year has been especially difficult with regards to medical related things with two of my kids.

It sounds like it... you're doing great given everything you guys have been through.

He has been responding great to the treatment and was in total remission on day 29. It is a long treatment plan - 7 months of typically, weekly

I'm glad to hear this Mark... I hope you and the rest of your family have
some time in the coming weeks to rest up and have some fun as well.

Best, Paul

|15`|03I am not expendable, I'm not stupid, and I'm not going.|15'
- |09Kerr Avon | Blake's 7 | blakes7.com | 1978 - 1981

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

This past year has been especially difficult with
regards to medical related things with two of my kids.

First, we completed the long awaited Hirschsprung's
corrective surgery. This involved multiple operations
over a period of a few months. All went excellent and
that has been completed.

Ah, success at last! Thanks for the update.... :-)

Second, was my daughter's herniated disc back in March.
That operation went great and that has been resolved.

So you made it over another hurdle. But then....

Third, on April 1st, my son (still getting used to being
Hirschsprung's free) was diagnosed was Leukemia (B-ALL).
That was a huge shock to us - especially since he has
already been through more medical procedures than many
gown adults.

You may remember our daughter had ALL when she was three.

The bad news is that kids with Down's syndrome have a higher risk of developing leukemia than "typical" kids do.

The good news, however, is that ALL in young children is the easiest form of leukemia to cure... or so we were told years ago. And we heard from a number of medical professionals that *kids with DS* do particularly well. :-)

He has been responding great to the treatment and was in
total remission on day 29. It is a long treatment plan -
7 months of typically, weekly treatments/visits. Followed
by once every 12 weeks for several years in the maintenance
phase.

Yes, it was a long haul for us too. I understand the treatment is a bit different nowadays. Is he getting any medications at home?

Taking things day by day and week by week.

I learned about that from the kids in the oncology ward. The younger ones lived in the moment... if they threw up, e.g., they'd be fine again almost immediately afterwards & wouldn't expect a recurrence. OTOH the nurses told me teenagers often began throwing up as soon as they set foot in the ward.... ;-)

There are good days and not so good ones, but overall
things have been really good and heading in the right
direction.

Glad to hear it! I think your positive attitude goes a long way too. Kids, especially the young ones, pick up on their parents' feelings intuitively
... but many of them seem to lose the ability as they develop language. It may be just as well in situations like this to have a kid who takes somewhat longer than average to reach certain milestones. If you believe things are heading in the right direction, your son probably will. And the not-so-good days are much easier to deal with if one can remain focused on one's long term goals.... :-)




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You may remember our daughter had ALL when she was three.

The bad news is that kids with Down's syndrome have a higher risk
of developing leukemia than "typical" kids do.

The good news, however, is that ALL in young children is the
easiest form of leukemia to cure... or so we were told years ago. And we heard from a number of medical professionals that *kids with DS* do particularly well. :-)

Yes, I remember your post on that subject. How long was her treatment? It seems it averages between 2 1/2 to 3 1/2 years - girls typically get less treatment.

Right - it seems kids with DS have a higher risk of getting ALL, but also do particularly well is getting rid of it.

We are on month 3 right now - just started a new phase. Depending on the phase, there are some daily meds he has to take at home.

I have entire care plan on printed out pieces of paper that outline the phases and what happens on what day.

Given everything that has happened, he is doing great and headed in the right direction. That is all we can ask for.

- Mark

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

You may remember our daughter had ALL when she was three.

[...]

Yes, I remember your post on that subject. How long was
her treatment? It seems it averages between 2 1/2 to
3 1/2 years - girls typically get less treatment.

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.

I understand the usual dosage of prednisone is more conservative than it was years ago, however, and from what you said in another echo I take it the effect on your son's behaviour & energy level has been mostly positive.
With a higher dosage over an extended period of time, folks tend to act "wired". They are sensitive to noise & light... they may be impatient & irritable... and they can't sleep. I've seen similar effects with virtually everybody I've known who has been in this situation regardless of their age or the medical reason(s) for using such high dosages. According to our Merck Manual they must all have been mentally unbalanced to begin with... but the oncology nurses know better. Like parents, they have far more experience with the "hands-on" stuff... [wry grin].

We are on month 3 right now - just started a new phase.

We had basically three stages... (IIRC) induction, consolidation, and maintenance. Would it be safe to say your son is on maintenance right now, and things have settled down to a point where you can write to us about it...? :-)

Depending on the phase, there are some daily meds he
has to take at home.

Ah. 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.

I have entire care plan on printed out pieces of paper
that outline the phases and what happens on what day.

Good idea. If it's anything like our daughter's protocol, it's quite a challenge to keep track of all this stuff. (Oncology parent joke... "if this is Tuesday, it must be methotrexate.") 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. :-))

Given everything that has happened, he is doing great and
headed in the right direction. That is all we can ask for.

Yes... and just as I feel I prepared myself years ago for the child I had later, I feel you've done the same in your own way. Hang in there.... :-)




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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.

I understand the usual dosage of prednisone is more conservative
than it was years ago, however, and from what you said in another echo I take it the effect on your son's behaviour & energy level has been mostly positive. With a higher dosage over an extended period of time, folks
tend to act "wired". They are sensitive to noise & light... they may be impatient & irritable... and they can't sleep. I've seen similar effects with virtually everybody I've known who has been in this situation regardless of their age or the medical reason(s) for using such high dosages. According to our Merck Manual they must all have been mentally unbalanced to begin with... but the oncology nurses know better. Like parents, they have far more experience with the "hands-on" stuff... [wry grin].

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. 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.

We had basically three stages... (IIRC) induction, consolidation,
and maintenance. Would it be safe to say your son is on maintenance right now, and things have settled down to a point where you can write to us about it...? :-)

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

Currently, we are in the Interim Maintenance I. It will be around the Nov/December timeframe when we enter Mainenance - which will be much less treatment.

Ah. 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.

Good idea. If it's anything like our daughter's protocol, it's
quite a challenge to keep track of all this stuff. (Oncology parent
joke... "if this is Tuesday, it must be methotrexate.") 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. That is basically by playbook for this entire process.

Yes... and just as I feel I prepared myself years ago for the
child I had later, I feel you've done the same in your own way. Hang in there.... :-)

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. I just remind myself that he is still much better than the condition he was in when he was first diagnosed.

- Mark

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