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.

Back from another inpatient stay

Fever Monday late night with cold symptoms.  Went to ER and got a room on 12th floor at 3am.  

Fever repeated Tuesday early afternoon but it went away on its own.  Wednesday early morning the nose virus swab came back positive with rhinovirus (a common cold virus).  Finished chemo and came home 7:30 pm.

Share some videos

There's this beautiful lady Sarah at the hospital who volunteers her time as a musical therapist.  Her music puts tears to my eyes every time with no fail.  Lucas likes her a lot and it's not a surprise that he mentions Sarah when he plays his toy guitar.  He said that he wanted to take his guitar to hospital to share with Sarah, since Sarah shared her guitar with Lucas.  :)  Many thanks go to my HTM sisters who sent the Dora guitar first week after diagnosis.  And the Cars drum is from a beautiful lady from my dancing team -- another instant hit.  :)



Lucas told me that he would translate the book into English and read it to me.  And this is what his reading is like.  :)  BTW, this is one of those books from my childhood that my parents brought here this time.  Even though they are in black and white printed on thin tissue papers, they became instant favorite for both of my boys.  :)

The last three lumbar punctures Lucas had were performed in the in-patient operation rooms.  The policy there is more relaxed and I have been allowed to stay with Lucas into the operation room, and wait there until his anesthesia kicks in.  The one we had on the past Wednesday was in the out-patient side and they don't allow parents to go in with the kids no matter what.  Lucas used to cry very hard on his way there, so hard that he was given the soothing medication a few times.  I didn't like the extra medications, especially seeing how dazed they make him (he had a very weird smile on his face).  I kept showing him the video that my friend Kelly took from how her daughter Angelina bravely waved goodbye on her way to operation room.  It worked!  At least he didn't cry even though he was a little upset.

Share some pictures

Lucas was still a little weak in the middle of May.  But with a week off chemo (there's one week break between interim maintenance and delayed intensification), he was almost back to his old self before the whole ordeal started.

Fixing house for mommy.  Thank you, Shannon and Jeff!  They love the drills! 5/16



Brothers having fun 5/18:

Looking at crabs is so much more fun than eating them 5/19:

Saturday nights are designated as sleep-in-the-same-bed-with-mommy nights 5/20:

Mommy's birthday needs a cake also. Alex telling Lucas, "look at Daddy's camera!" 5/25

Fully potty trained in 2 weeks, even clinic visit are accident free. Yep, say bye-bye to diaper rash! 5/28

And we looked through all the cards we have received.  My neighbors pick the best cards!  Thank you for all the care and help and gifts we have received from all our friends.