2nd day with ANC=0

The doctor wouldn't let us go home until that number shows an upward trend.  Considering the chemo he got recently, it will be a few days.  We worry about hospital super bugs a lot.  He is clinically fine -- another proof that ANC zero is asymptomatic.  He is just super bored here as we don't feel comfortable letting him go to the playroom.

Fever again with super low counts

We started the second half of Delayed Intensification on 7/2 with very strong numbers.  We did CBC on 7/1 and Lucas got CPM, AraC, IT MTX, and started Thioguanine on 7/2.  We stayed overnight on 7/2 for the clearance of CPM, just as we did with this chemo twice in Consolidation.  We came to clinic on 7/8 again for physical and CBC and got another IT MTX 7/9.  I have been doing his IV AraC at home for two weeks.  We usually don't turn on the AC unless it's over 85 but we kept the AC at 74 during the days when Lucas was accessed since we realize that his sweating would be problematic for the dressing.  I felt quite stressed for the past two weeks, doing the AraC, and worried that his dressing would come loose.  Luckily it only happened once when his dressing failed us and we had to go back to day hospital to get him reaccessed.  

7/13 Saturday -- the first day after all AraC is done and I felt like celebrating that there would be no more need to keep him accessed at home and administer IV medication for him -- he developed a fever at 10pm.  It was 100.6, then 100.8, then 100.6 -- we didn't rush to the hospital at once since he looked fine and we just thought it might get lower than 100.5.  By the time we got to the ER, it was almost midnight and by the time we got in a room on 12th floor, it was 4am.  Since last time we went to ER at the middle of night and Lucas got woken up on the way from ER to ward, he was very angry and loud and probably woke a lot of people up, I kept him awake until he got to the floor.  Jianwei thought I was cruel but I really didn't want to wake people up again.

His last fever of 101 was 1pm on 7/14 and he shows no sign of sickness other than tired and loss of appetite from chemo.  His ANC was 75, hemoglobin 8.2, platelets 25 at admission.  He was dehydrated that day and after some fluids, his ANC was 36, hemoglobin 7.1, platelets 9 on 7/15.  His heart rate has been above 120 and sometimes 150 so the doctors decided to transfuse him with platelets and blood in the morning of 7/15.   His energy level got a lot better after the blood transfusion.

Today he is due for Vincristine and Peg-ASP.  I didn't argue with doctor about this since I know the protocol says it very clearly that chemo will go on regardless of minor fevers and low counts.  The doctor would like to keep him hospitalized until he shows signs of improving/stabilizing of ANC.   At least he gets to go outside of his room this time.  We don't feel comfortable for him to go to the playroom if there were many other kids there, with is super low ANC.   However, he enjoys his walk in the hallway just as much.

I came home last night to spend some time with Alex and now I'm going back to the hospital so Jianwei can go to work in the morning.  Hope his ANC will rise soon!

Waiting to go home

ANC is 575 today, not high enough to start the second half of DI.  Fever free for almost 48 hours and ANC showed signs of improvement.  That gives us the ticket to go home.  Got blood transfusion yesterday as Hemoglobin was down to 7.6.  That blood was very dark colored and it raised his hemoglobin to 9.3 now.  

We will probably come back early next week to get chemo.

Fever and in hospital again -- and awful new port accessing kit!!!

Very similar to last time, stuffed nose and low grade fever.  ANC 470, which is very close to what it was a week ago and he didn't have any chemo last week.   His ANC needs to be above 750 before the next 4 weeks of chemo starts.  If he didn't have this fever (possibly cold again), his ANC would have been high enough and he was scheduled for lumbar puncture, CPM and Ara-C tomorrow.  They haven't canceled anything yet.  They will draw his CBC again tomorrow 4am to see if it would jump to above 750.

I don't mind delaying the start of next block for a few days or a full week.  The next 4 weeks are going to be gruesome and I'd rather him to be well above 750 rather than just made it to 750.  But protocol doesn't take account of what I think or feel.  Having my fingers crossed that ANC stay below 750 but fever begone tomorrow.  So we can go home soon and come back next Monday to see if ANC is above 750.

The doctor also feels his heart murmur worsened and ordered ECHO heart scan when his fever is gone.    Another thing to worry about, sigh!

Lucas has been eating well and active for the past week.  He eats a good portion of blueberry and baby spinach now -- a much needed addition to his rice-noodle-tofu-fish diet.

We had our worst day in terms of port accessing.  First access at ER needed to be taken out as soon as we get to 12th floor as there was a gap in the sticker covering (thus not sealed).  The nurse on 12th floor told us that they filed an incident report for the faulty execution by the ER nurse.   Then it got worse.  The hospital have just got a new version of port accessing kits.  It's the first time the nurses open up the new version -- they were making comments about how things are arranged differently now, how unthoughtful that one can't reach the hand sanitizer first.  As soon as the bridge sticker goes on, I knew the new one is not improved version.  The new bridge sticker is very stiff and doesn't stick well -- it just stands as a triangle instead of having two sides stick to skin nicely.  But then the big cover-up stickers -- they don't stick at all.  The nurses kept on putting more and bigger ones on top of each other.  After 5 minutes of 6 hands trying to hold the stickers down -- we finally gave up!  Tried to call the port charge nurse but she is not on the floor.  Got talk to the hospital central line charge nurse.  Since it's already his second time being accessed, and efforts were being made to keep it sealed, we would just change the stickers (sanitizing before putting on new stickers but no change of needle).  There's no old version of kits on this floor so one of the nurses went to 8th floor to get the old version, while the other nurse and I tried to keep Lucas in the same lying position he had been in.  The old kit finally came and thank God it worked as well as it always did.  By the time the whole ordeal ended, Lucas was held down in the position for a good half hour.  Both nurses's faces were red with sweats!  I think the nurses handled the unexpected situation well.  But I do wish they had tested the new kit before using it on a real patient!  Now the next time we get accessed, I will ask to see the package to make sure it's the old version!!!   For the other ALL parents out there, old version has green gloves and new version has beige gloves.  

Sleeping spell

Lucas has been needing more sleep since the first week of DI, and the 3rd dose of Vincristine and Doxorubicin completely tired him down. He is too tired to get up but luckily he was still hungry at 6am.  He has been picky about his food.  Rice, noodles, scallion pancake, dried tofu, bacon, fried fish fillet, milk and water.  Nothing else can get through his mouth for the past five days.