Wednesday, March 5, 2014

Recent chemo hold and hospitalization

1/20 begin 3rd cycle, ANC 3040, same chemo dose (increasing in actual pills since Lucas has been growing and gaining weight)

2/4 I still like to take Lucas for CBC labs in-between visits.  Surprising ANC = 602,

2/9 recheck ANC = 1334

2/18 scheduled clinic visit with Vincristine, Pentamadine. ANC = 538.  Needs IVIG but had a reaction (severe chills).  Lucas was having a cold and the lungs didn't sound very clear.  Chest X-Ray shows no bacteria infection,  Lumbar puncture which was scheduled for the next got postponed for 2 weeks.

2/21 Another CBC lab shows ANC = 288, chemo hold since it's less than 500

2/25 Clinic visit. Lungs seem to be clearing up. ANC = 704.  Need 750 to restart chemo.

2/28 CBC lab.  ANC = 238.

2/28 Friday.  My parents were scheduled to leave for China very early next morning.  We had had a busy week getting the shopping, visiting USCIS, with increasing clinic/lab visit for Lucas.   I took Lucas for lab visit in the morning, took my mom to USCIS at lunch time to get a stamp in her passport since she has received the green card with correct gender.   Our babysitter Lori took boys to preschool then Jianwei picked them up in the afternoon -- it was their last day at that part time preschool.  I thought Lucas's ANC would be higher than 750 and I didn't hear back the result until 2pm.  Anyway, when I got home shortly after 5pm, Jianwei informed me that Lucas just woke up and feeling warm.  I took the temperature and it was 101.2.  It was really bad timing since my dad was busy preparing the last dinner before their departure.  But we cannot wait, off to ER we went.   Lucas started to have cold symptoms late Wednesday (he had almost a week free of cold symptoms).  Not being able to get the full dose of IVIG surely didn't help!

3/1 Saturday: fever with rising ANC.  It's hard during winter since Alex is not allowed in hospital (no siblings under age 12 can visit during cold/flu season) and the playroom hours are very limited during weekend.  We had to ask a nurse to look after Lucas when Jianwei and I switch shifts of staying home with Alex versus staying at hospital with Lucas.

3/2 Sunday: no fever with dropping ANC.

3/3 Monday: ANC 42.  Fever free for 24 hours.  Dr. Setty is the attending!  Dr. Setty let us go home with super low ANC before -- she understands that some parents can be trusted to take care of their kids at home.  If ANC is the only thing holding back the kids, she would let us go.  So this time she let us go once again.  

Life is surely more difficult without grandparents' help.  We are so thankful to have our wonderful babysitter Lori.  She took care of Alex during frontline treatment when we took him out of preschool for fear of him bring home viruses.  Alex absolutely loves her since she is always so patient and fun!  When we both took Alex to a friend's birthday party, other parents would think Lori is the mother and I am the nanny since Alex always runs to her instead of me!  I'm so thankful that Alex had her since frankly he was getting much needed attention from her during those difficult months.  She has been providing transportation to the boys for their part time preschool so Lucas got to her a little bit.  Today is the first day that Lucas spent time with Lori.  I'm so happy to see them bonding finally.  Alex is very jealous that Lucas gets to stay home with Lori.  I would be jealous also!  :)

Another CBC lab this Friday and hoping the results will be good.  Chemo can resume and Lucas can start full time preschool -- which he officially started 3/3 but hasn't been able to go because of low counts.

The hardest part is that both Jianwei and I have the same cold (Coronavirus).  It's pretty rough with more symptoms than what I normally experience with cold.  But we couldn't rest since we need to save our precious out-of-office time to take care of Lucas.  I wish I could sleep in all day as I felt rather congested and dizzy, but I didn't have the luxury.   I think that is the hardest part of taking care of a sick kid -- you have to take care of them even when you are sick yourself.   Luckily we are in good health for the most part and hopefully we will get over this cold virus soon.   And hopefully I didn't pass it on to any of my coworkers. 

I used to *despise* coworkers who came to work when they were obviously sick.   "Can't you work from home instead?"  Now I know that some of us just can't.  Because our sick kids who have too weak an immune system to leave home are occupying our home.  I cannot work from home since they are too young to leave me alone.  Jianwei can since kids tend to leave him alone regardless. :P  I couldn't afford taking more time off since I have work to finish and I want to save my time off for future hospitalization and clinic visits.  I know every time I get a cold, I will have lingering cough for a while so a day or two wouldn't cure me.  I thought about going to Panera Bread to work to infect the strangers instead of my lovely coworkers.    Hey, I feel like I need to sing the Despicable Me song!  Anyway, I *despise* me!  Hoping none of them get sick!