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....)

High Dose Methotrexate 3rd Round

We came to hospital 7:30 this morning -- still 1 hour late for the appointment.  Lucas is due for his 9th lumbar puncture/spinal tab with Chemo.  Since he had low blood sugar problem and he needed to be fasting for the general anesthesia, his surgery is scheduled at 8:30.  He has been eating great and rather active at home -- no blood transfusion has been needed since last round.  By 10am I met him at the post-op area and he was very irritable and asking for food -- but the policy said that no food until they leave the post-op area.  I have the glucose meter with me all the time now so I tested him when the nurse left us alone.  What do I know?  37!  I started feeding him right away and with a small bag of chips together with a Popsicle, he tested 73 after half an hour.  I'm glad that I acted on my own terms though.  Even though Lucas was not sleepy but I just felt that I had to know it for the peace of my mind.  I think I will be more prepared with better snacks and always check him after LP. 

We got admitted after LP and his bicarbonate IV fluids (with D5) started just before 1am.  By 6pm his urine pH cleared and after a dose of Zofran (given through IV every 12 hours for HDMTX), his HDMTX started 6:35pm.  When his first 30 minute loading dose ended switched to 23 1/2 dose, we had some disagreement with the nurse about the rate the bicarbonate should be running.  It turns out that we remembered right and the rate they were set was 2/3 of what it should have been.  We just feel that there are many things that parents need to be monitoring all the time. 

They just decreased the concentration of his bicarbonate fluids from 40 to 35.  The reason they gave us is (1) his urine pH has been consistently 9 and (2) he cleared the previous two times fine.  I'm not sold by the ideas because even letting the urine sitting in diaper/cotton ball for a small amount of time would raise the pH from 8 to 9 (at least that's what they told me).  And he already cleared the second time around slower than the first time.  But it's hard to argue with the night shift residents ("the doctors who make decisions").   Nurses don't make decisions, their job is the execute what has been ordered.  And if parents/patients keep question their actions, they would have to ask the doctor again.  So some of the nurses have made up their minds that they won't pass any of your concern or questions.  We really appreciate the ones who always take our concerns seriously and try their best to get the answers that we need.  Anyway, for now, we just have to try our best to get the urine sample soon so the pH reflect more of the truth. 

If things go smoothly, we can go home Thursday morning.  Lucas has been rather hyper today -- as if he is on steroid (though he didn't have any typical steroid side effect when he was on it in induction).  He would suddenly shout out loud -- demanding something that was thrown away a while ago.  It was as if his mind is scattered and he would suddenly get very tense about a remote memory.  I hope it's just because he needs more sleep and he had anesthesia. 

What hurts and what helps

In the past few days there are a stream of posts on ALL parents list about what comments from families and friends that they could live without.  I thought it was worthwhile to share and could let out some of the bitterness of my own.  It doesn't apply to any of you who are reading this post -- as I know you are dear to my heart by keeping reading my blog so far into the journey.  The fact is that it's a very long journey and most people lose the initial steam very quickly.  It's a very lonely journey too when your world is strictly about your cancer kid and isolated from your old life -- and sometimes there doesn't seem to be a light at the end of the tunnel.   Most people don't talk to me about anything other than my cancer kid any more.  And very soon I don't want to talk to any of them since I don't want to be constantly reminded about my cancer kid.  I do my vent here and don't want to repeat any of the comments once again if I don't have to.  My identity has changed into having just one facet: mother to a cancer kid.  As one other Chinese cancer kid parent mentioned "we suddenly became the minority of minorities".  As David Servan-Schreiber said in "Anticancer": "I began to feel frighted that I was in a category apart, a category of people defined primarily by their disease.  I was afraid of becoming invisible.  Afraid of no longer existing, even before dying.... Most people seemed to think it was wrong to have a good laugh when you had a serious illness."  Yep, that's pretty much how I feel.  And what else to do except to suck it up and get used to it.

Here are some of the things that bother us the most:

Don't #1: don't tell me that I'm strong and my cancer kid is strong.  The fact is that we are not any stronger than you and we don't even want to be strong.  The undertone of that repeated comment is "I'm glad you are dealing with it, not me!"

Don't #2: don't keep asking me what my practice has been while being pregnant and raising up kids.  I know you don't want it to happen to your kid.  But do your research elsewhere and don't keep picking on my anecdotes.  The undertone is that I did something wrong to cause my kid to have cancer.

Don't #3: don't ask me when a bone marrow transplant will be done.  It's okay that you don't care about my cancer kid and want to stay away from me.  But if you do care, by now you should have known that most leukemia kids are treated by chemotherapy alone and can be cured.  Bone marrow transplant is reserved for kids who are in worse condition than my kid is in.  I don't want to hear about it.  Thank you very much!

Don't #4: don't tell me that we are lucky to have this rather curable cancer and the cure rate is 4 out of 5.  I know my statistics and don't need to be lectured.  Let me ask you: how do you feel if you know your kid can't make it 20% of the time?  Do you feel lucky?  How do you feel when you spend 23 out of 29 days in hospital with your kid, constant worrying about the worst might happen?  Do you feel lucky?

Okay, so by now you feel like you want to stay away from me even more.  Right, what could you say or do to make me feel better?

Do #1: Just let me know that you are listening via comments, emails and messages.  The sheer existence of you is all I need most of the time.  It is very lonely sometimes.  When I'm frightened and worried, just let me know that you feel the same thing.

Do #2: Just try to keep up the same conversation that we used to have, maybe through email rather than phone calls and in-person conversations.  It actually won't make me feel bad by sharing the excitement in your life.  Quite to the contrary, it makes me smile to know what's going on in your lives.  Whether it's about parenting, cooking, fashion, dancing, crafts, reading, movies, fitness or whatever topic that you know I'm interested in, keep me in the loop!

Do #3: I really appreciate a friend, who were not even a very close friend, that came up with a list of actual things that they could help.  Whether it's to give some normalcy to Alex or my parents, highly appreciated!  Also highly appreciated is meals sent and recipes shared, geared towards Lucas's better food intake.  And watching my neighbors clearing snow off our driveway definitely puts tears in my eyes.

Do #4: I know this one is going to be hard.  But if there's anyway that you can get me out relax a bit, away from Lucas, that would be very nice.  I'm looking forward to going back to work on Monday, though I'm not looking forward to answering questions about the hospital stays and Lucas's conditions. I will try to mix in some jokes when answering those questions to lighten it up -- and please laugh with me if all possible.

Notes on Lucas: we came home yesterday and he has been doing well.  I poke his fingers for glucose at least twice a day.  I still need to practice as I have been needing to poke him twice for a single reading.   Note to myself: my glucose before dinner yesterday was 71 while Lucas's was 79.  Not eating carb for lunch makes a huge difference.  Carb + other things distributed evenly throughout the day should help.

Today is the last day of his 4 week IV antibiotics.  He started to have another rash from the extra adhesive.  Theoretically the needle to access the port only needs to be changed once a week.  But for the past 4 weeks, his needle was changed 3 times prematurely -- once because the nurse reached out to something while holding the end of tube and pulled the stickers off, twice the stickers came off prematurely on its own.  But the extra layer of adhesive really bothers him, so I'm really glad they can be off soon and the area around his port can finally breathe a bit after 4+ weeks!

Does Kung Fu Panda have tubie?

Our new favorite movies are Kung Fu Panda 1 & 2.  Actually these are the only movies we have been watching since moving to Hem/Onc floor.  Lucas enjoys the action as well as the silliness of the black and white.  He has many belly laughs throughout the movie.  I found myself still enjoying it after watching it probably the 6th time in 3 days.

He has a hard time to decide whether the fortune teller sheep was good or evil.  I told him that even though the sheep was seen with evil peacock, she is good since she helped Kung Fu panda later on as a doctor.  Then Lucas asked: does Kung Fu panda have tubie?  In his mind, tubie is a must to be treated medically.  :)

He kept referring to Kung Fu Panda 3 as well (because Shrek has number 1, 2, 3, 4).   I looked it up and it will be out 2016.  Hopefully by then I can take the boys to the move theater to watch it!

Chemo tomorrow on schedule

Since it has been shown that the seizure last Thursday has no direct association with chemo, the doctors decide that chemo will still be on schedule.  Lucas will get another dose of vincristine, together with high dose methotrexate, which would require 3 days of clearing.  Lucas has been doing well the past 2 days.  He eats very well and is very playful.  He even allowed the company of nurse and PCA while we stepped away to get food from cafeteria.  Finger poking is still every 4 hours and he doesn't cry at all now with the actual penlet/lancet for the glucose machine.  I learned how to use it by doing it on my own fingers.  It's going to be part of our life now.

It's great to see Lucas so well today and it's sad to know that he will have another chemo tomorrow and will have huge canker sores in his mouth and don't feel well in general.  We just have to remind ourselves that he is not cured yet and the extra medication does more good than evil.  It's hard to look ahead to 3 more years of chemo considering what we have experienced the past 3+ weeks.  It's in my nature to plan ahead for everything and I really have to try harder to live one day at a time.

I came back home this evening and took my parents and Alex out for grocery shopping.  I will have a good night of sleep tonight and get ready for 2-3 hard nights of 1 diaper every 1.5 hours.

Got a room in Hem/Onc floor

The floor is truly packed!  The nurses and PCAs we are getting are all floaters from other floors.  Lucas is in stable conditions and good spirits.  I came back home to get some good sleep since I didn't get much sleep last night.  Usually they give the more experienced nurses to patients who would undergo chemotherapy so we are not surprised to get the floaters.  They won't let us go home before the endocrinologists figure out what causes sudden unpredictable drop in glucose.  The scheduled chemo is next Tuesday and it might get delayed if they couldn't rule out chemo side effect from the picture.  In any case, it will be another longer stay in the hospital.

Still in ICU

MRI cleared!  Doing glucose tolerance test now -- no food and no sugar IV until his glucose drops to 50 -- then get a blood sample for lab studies.  He hasn't eaten since 8pm yesterday and was taken off glucose IV 5pm.  His glucose was 67 on 10pm.  It's not dropping as quickly as we thought and I have mixed feelings for that -- I want this test to be done so he could start eating tomorrow, but on the other hand I'm happy that his glucose does not always crash like it did.  And I want this glucose below 50 to happen before I go to bed so I can help to assess to prevent him having another seizure.  I had to remind the doctor to get the dextrose bolus ready since apparently you cannot always tell the happening of seizure by heart rate monitor, pulse monitor, oxygen monitor, blood pressure monitor, and breathing monitor.  And him sleeping at the time is definitely not very helpful.  So Jianwei and I are taking shifts to get some sleep tonight.

After the glucose tolerance test, we will be able to leave ICU and go to Hem/Onc floor tomorrow -- but it's full now and we hope somebody will be discharged tomorrow.  We regret complaining about 2 weeks stays at Hem/Onc floor -- we miss it immensely now and really want to leave ICU tomorrow (and never come back!).

Long day, short summary--in ICU now

Keywords in chronicle order: hard to wake up 8am; came to scheduled office visit 9:15am; low blood sugar 10am; seizure that lasted 30 minutes 10:30am; ICU 11am; CT 12pm; EEG 2pm; fever 3:30pm; spinal tap to check spinal infection 4pm; finally woke up but eye lids so puff that can't really open eyes 7pm; ate good dinner but super cranky.

He had probably a dozen drugs today.  2 anti-seisure drugs, 4 antibiotics, sedation drug, calming drug, Tylenol -- and there must be ones that I'm not aware of.

ICU for the tonight and tomorrow.  Glucose check every hour again.  MRI tomorrow and blood culture and spinal fluids results will be out tomorrow morning too.  If everything is negative and he is stable, he will be transferred to the Hem/Onc floor.  Since the seizure he had was life-threatening, they won't let us go home any time soon.

Cause of seizure still undecided.  Probably a combination of chemo side effects, low blood sugar, and bacterial/viral infection.

Chemo is not known to cause low blood sugar, but it might be a catalyst.  Cause is yet to be found.