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.

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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.

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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.

Delayed intensification will start tomorrow.

Tomorrow marks the start of the toughest chemo phase in the whole protocol.  It lasts 8 weeks if there's no delay.  The clinic schedule for this week looks like this:

Tuesday: clinic visit, CBC, weight, height and other routine exams.  Then VinCRIStine and DOXOrubicin IV push.

Wednesday: Fasting for general anesthesia.  Lumbar puncture with intrathecal Methotrexate.

Friday: Pegaspargase, IV over 1-2 hours.

Lucas will also take Dexamethasone twice a day, every day for the first week.

Lucas has been eating well and slowly gaining weight.  He looks good and is almost as active as he was before.  We are pretty sure he will make the cut to start chemo tomorrow (ANC > 750 and platelets counts > 75).

Last High Dose Methotrexate

Lucas started his last scheduled hospital stay on Tuesday morning and he cleared to start chemo 5:45pm.   Jianwei took time off for 3 days to stay with him in the hospital.  I get off work a little early and take Alex to visit them in the evenings.  I miss Lucas a lot but surely also enjoy the special moments with Alex.  Both of them have been great sweet boys.  Lucas is very used to hospital setting now and is known to enjoy flirting with young nurses on the floor.  Jianwei doesn't like to have too much TV time for the kids so Lucas were out playing all the time -- digging through every single toy in the play room and doing their rounds on the floor.  His 24 hour number for MTX blood level was 23.  We will have the 42 and 48 hour number 11:45am and 5:45pm today.  Hopefully Lucan can come home tomorrow morning.