The diaper rash that wouldn't go away even if potty trained

Today we went for our scheduled clinic visit -- the visit in-between treatments to check on Lucas and see if he needs any blood transfusions.  We had an eventful weekend.  We called the on-call doctor both Saturday night and Sunday night, ready to go to ER if the doctor advised us in doing so.   Saturday's call was about the recurring nose-bleeding Lucas had after he went to bed.  His platelets was 165 last Monday. It was on a declining trend and he got HDMTX and Vincristine since then, so we were worried that his platelets was low.  Finally the bleeding stopped and we went to bed, but either Jianwei or I slept well worrying that it might happen again.

Lucas has been having rashes on both sides of his groin area since the previous HDMTX and it was stable for 2 weeks then got worse during the past HDMTX.   The nurse practitioner thought it could be yeast infection and she prescribed cream for yeast infection.  However I didn't like the creamy texture -- as it actually makes the skins in the crease stick together even more.  And with 2 applications it seemed to have made things worse, I stopped using it.  We came home decided to let Lucas just wear boxers without diaper (and leg warmers with no pants) so that area can stay as dry as possible.  We were ready for a lot of accidents.  But actually Lucas did pretty well.  By Sunday he only had 1 accident and got the rest of his peepee and poopoo all in the potty.  So I didn't check on that rash until Sunday evening, thinking that a diaper rash would resolve automatically when there is no diaper.  What I found was a scary scene.  Broken skins stick together... bright red skins.  I screamed for Jianwei and almost cried.  I felt desperate.  I felt I have had enough and really couldn't deal with it any more.  Lucas didn't expose any sign of irritation -- not until when I pull his legs apart and the skin that stick together separated.  We called and the doctor said it's our call whether we wanted to go to ER or not.  With my limited medical exposure, it didn't look infected (Jianwei even argued with me that it was getting better -- getting new skin.  I had to tell him that new skin look pale pink, not blood red!)  I went to CVS and got Bacitracin as precautionary measure (I read on ALL parent board that triple antibacterial cream such as Neosporin is not recommended for chemo kids).   I applied Bacitracin then a thick layer of Desitin paste.  I just like pastier thicker cream much better than the ProShield that the doctor recommends for chemo kids.  Anyway, today we had a "wound specialist" came to take a look.  They still thought the edge of it looked like some sort of yeast infection.   Different doctors and nurse practitioners try to give us different suggestions.  At the end, one sensed our distrust and said we could ask our pediatrician instead.  But they all agree that the broken skin needs to stay moist by having a thick layer of barrier cream on.  From my own experience, thicker pastier cream such as Desitin paste is a much better barrier than the creamier counter part, and one doctor agreed with me while the other two still said proshield is the best. The doctor who agreed with me (the one who actually have kids and practiced general pediatrician for 5 years) suggested mixing baby powder with creamier ProShield or the anti-fungus cream.   They all agreed that the thicker the barrier the better -- and no need to wipe it all clean when reapplying.  So I'm fine applying other kinds of cream as long as the top layer is a thick layer of Desitin paste.

Lucas's platelets was fine -- low but not low enough to get transfusion.  His hemoglobin was 7.5 so he stayed till 3pm for blood transfusion.  The doctor also confirmed multiple canker sores on his left cheek.   It's a pain in the neck to feed Lucas right now, especially since I have a severe all body rash/hive as some kind of allergic reaction.  It started Saturday at dinner table so I assume it has something to do with food, but I couldn't identify a source.  I think the fact that I'm under constant stress is taking a toll on my body and my immune system is confused -- hence this massive allergic reaction.   I went to urgent care this morning as it was getting more and more massive -- swollen eyelids, hives from head to toe -- what's the English word for palm of foot?  The itchiness there is the worst of all, even worse then the itchy fingers.  The itchiness is so massive that if I had a gun, I probably would have shot myself.  Anyway, I'm still alive and on cortisone steroid pills.  I'm waiting for it to start to work -- but at least now I feel hopeful.  I had an episode like this (but more slowly developing) after giving birth to Alex and the pills fixed it -- hopefully I will be myself again soon.

We really hope Lucas's rash/wound will be resolved soon.  Less drama and less stress is what we need so the rest of us won't break down... From what I know, the next phase of treatment is the worst of all.  And the beginning of long term maintenance has its own challenges.   And the end of long term maintenance sometimes means liver problems as it's tired from years of chemo treatment.  And the end of treatment means the start of worry about the possibility of cancer coming back when all the machine guns are taken away.  I know my family needs me, but sometimes I'm just withdrawn and looking for a quick/easy exit.  I know I couldn't just comfort myself by saying tomorrow will be a better day -- I could just try to enjoy today for the gift of life for today.  I've been trying to stay by myself this evening and let Jianwei and my parents handle the kids.  I feel like an injured animal who just wants to lick my own wounds right now (which means swinging between trying to meditate to scratching myself away....)