Emma's almost the same age but is on a different protocol (standard risk at St. Jude's). I'm not sure what kind of chemo your daughter had this round, but Emma's combo is Vincristine/Dex/LPIT with Methotrexate once a month (in addition to the other types of chemo during other weeks that aren't so hard on her). But this combo is just awful many times. We had two decent months and then WHAM! Last month was bad.

If I were you, I'd try pain meds for the achiness. I know nobody likes giving narcotics to kids, but my rule of thumb is that if Emma can't rest, eat and play reasonably well, then her body can't heal like it should. So if pain meds help in that arena, then the benefits outweigh the risks.

I have also found that during this week of the month, Emma needs to go down for a nap an hour or so after waking, then will take another nap a few hours after that. So you might try getting Kelly to lay down for a nap when she starts getting really fussy.

We also give Zofran around the clock during this week, but we also give Benadryl at night for its anti-nausea properties with the added benefit of helping Emma sleep. Again, I believe the benefits outweigh any risks here. We have also found that Zantac given around the clock can cut down on the tummy problems. Lastly, Neurontin (Gabapentin) is given one week prior and the week following Vincristine. Very helpful!

One more thing....remember that the spinal taps can cause awful headaches. Some hospitals do more than others to treat it, but at ours they recommend pain meds, laying flat on their backs and giving caffeine.

If none of that pans out and the docs aren't concerned, then do what I do...plan NOTHING for those days and lay on the couch with her the entire time. Sometimes you just have to accept the inevitable until it gets better.

I do hope that helps. Good luck and keep us posted.

We've been off treatment now for 5.5 months.  I would definitely say that he did present with more symptoms toward the end than he did in the beginning.  I mean this in the way of leg pains and tummy pains, etc.  As for the steroid weeks, instead of him previously getting uptight and grumpy, he'd usually get really, really happy those weeks.  Really weird.  That happened more in the last year.  I did notice that his bowel habits changed in the last year he had loose stools which got progressively worse until a couple months off treatment.  The leg pains started about the same time and he'd get them every month - sometimes so bad we'd have to carry him upstairs.  That never happened in the beginning.  When you think about it, it is a very long time to be on chemo and with their little bodies, there has to be a breaking point.  Instead of the common "fear" of going off treatment, I couldn't have been happier because I knew these symptoms would subside and guess what - THEY DID!

We are only 3 months into LTM and it definitely isn't all it was cracked up to be.   However, I have decided that is how the treatment goes.   I think the doctors know you can't handle 2 plus years of hell so they tell you LTM is going to be better and it is - somewhat.   But not the normal we dreamed of.  We can't find the level of chemo Lily should be on.   She has really been off all meds most of the time which is nice and she feels good however she can't go anywhere because of her counts being so low.   The steroids I think are strange because some months are HORRIBLE and other months are bad but not as bad   Today we had a LP and she has felt horrible with headaches and feeling sick to her stomach.    She also has a hard time sleeping.   We have tried benadryl (does nothing).   I have even given phenergen to help her sleep and it doesn't do much either.

Oh well, I guess it could be worse but definitely no walk in the park

She is on Total XVI. If I'm not mistaken, it's a protocol developed by SJ and it's not used by other hospitals. It's mostly the same as the other main protocols, except that Emma has two three/four-week Reinductions instead of DI. She also doesn't take oral Methotrexate and she gets weekly IV chemo three times a month right now and oral 6MP for two weeks. She also goes for weekly clinic visits throughout LTM, as opposed to monthly for other protocols. Those are the main differences I have noticed after being on LLS boards, but there are surely more.

Ours was an older child (Sam was almost 16 by the time he hit LTM), but LTM for us was relatively stable.  Once Sam hit LTM, his counts became pretty steady, and his situation became much easier for him and us to deal with.  He was never again hospitalized once he reached LTM.  He did occasionally get sick from chemo, and of course anytime he got a cold or virus, he had it for much longer than other kids in school.  (They would have a GI virus for a day or two, he would get the same virus and have it for 5 or 6 days).

But he went to school regularly in LTM (except for sick days, clinic days, late days when his stomach was upset from the late night 6MP).

He had some side effects -- mild AVN, and some other side effect issues.   (And he had a serious trampoline knee injury in the middle of it -- unrelated to the leukemia, but much harder to deal with because of his leukemia and chemo.)

But LTM was much much easier than the earlier stages.  I think it is for many of the kids, but certainly not for all of us, as the OP's post demonstrates.

Good luck to all.

Doug

Beth, don't get discouraged! Be hopeful, but be aware of the possibilities. Even as bad as it has been in LTM, it's still much better than the harsh chemo phases like Induction. So don't stress it until there's something to stress about, OK? And remember boys tend to not be so sensitive to the chemo as the girls.

Kim~what do you mean about boys not being as sensitive as the girls with chemo? Never heard of this before, and in my opinion and experience hasnt been the case.

Thanks.