My two superheroes

3rd transfusion this week

Platelets dropped from 34 to 20 in two days and the NP doesn't feel comfortable to wait until Tuesday.  ANC 320.  Continue to hold 6mp and oral MTX.  Will resume other chemo next Tuesday.  

Blood transfusion and low ANC

Hemoglobin is 7.2 this morning and Lucas got blood since the nurse practitioner we saw worries that if he gets sick, it would be a lot of burden for his heart.  His ANC dipped into under 500 also (390) and platelets 34.  So after spending 8 hours in the clinic getting blood today, we will go back on Friday to recheck to see if he needs more blood products.  Jianwei and I have been taking turns to take him since we need to go so often.  MWF this week.   Next Tuesday and Wednesday Lucas is due for Vincristine and lumbar puncture.  Obviously when they say chemo hold, they only meant 6MP and MTX.  

Platelets transfusion

Today they had to draw more blood than what a finger poke would be able to give, since they expected plates would be low and not enough blood amount would be hard for lab to get a value.  So Lucas had his rare occasion of arm poke.  The nurse who drew the lab was amazing -- she is the one and only one who can do such things.  I joked with her that she can never take sick leaves or be on vacation!  Still, Lucas cried hard and kept saying "take it out!".   I later asked him whether arm poke is more painful than port access (he sometimes get port access without numbing cream).  He told me he preferred port access since Cindy (the child life lady with an iPad full of games) would be there for port access.  :)  We anticipate more frequent arm pokes since we would like to monitor his liver functions more closely in-between port access.  I will make sure Cindy would be there for the next arm poke so he could associate arm poke with some not-too-awful memories.

So the plates came back as 8 and Lucas got the chest poke for port access half hour after the arm poke.  We got there at 8:30 and left after 1pm.   We need to go back Wednesday again since his hemoglobin is 8.2 today but I didn't feel like he needed transfusion right away as he is still pretty active and energetic. His WBC is 1.3 and ANC 754.  Chemo hold is still in action.  We probably would see numbers get lower before they get higher.  I'm hoping we have caught this early enough that he wouldn't be wiped out.

Platelets 24, chemo hold

At least hemoglobin is 9.4.  Now the doctors think the drop in counts is indeed from LTM drugs.  So we will hold the chemo and recheck on Monday.  

Needed blood transfusion last Friday

Lucas had been looking really pale before last Friday as well as fatigued.  The look reminded me of the week before our initial diagnosis and I was worried about the big R word.  His hemoglobin last Friday was 6.4, a drop of 3 from 11 days ago.  Platelets dropped from 240 to 140.  WBC stays high.  The big drop of hemoglobin took us by surprise since it had been a while since his heavy artillery phase and it had been stable for almost 3 weeks.  I asked the nurse practitioner what's the cause.  She consulted the most experienced NP (served many years, longer than any doctors there right now).  They think it's still a residual effect from the intensive chemo and his bone marrow is tired and confused.  They ordered 1.5 times the amount they would usually give Lucas for blood transfusion.  This is his 15th blood transfusion and he has also had 8 platelets transfusions.  Most kids undergoing the same treatment only get a handful of transfusions.  Lucas has got a lot more and we worry about the fact that his bone marrow is not producing as much as it should.  We also worry about the iron overload and possible antibodies associated with large amounts of transfusion.

We will go back tomorrow to get another CBC to make sure it won't keep dropping.  Fingers crossed!

First week in LTM

Tuesday I took Lucas for his lumbar puncture.  We had a very responsive anesthesiologist and she looked into Lucas's medical record and gave me a list of all the anesthesia drugs he has received.  Most often he was just given the first two. But he was crying very hard on Tuesday for mommy when he got pushed in.  The outpatient-only surgical center is very strict about not letting parents go in with the kids.  I tried to show him the video I took when he was quite and calmly pushed in once.  He told me that it was Alex and not him.  He was still a baby and wanted his mommy.  I have always been the one who takes him to his lumbar punctures since he very clearly prefers me to Jianwei.  He only wanted me to hold him as soon as it gets dark when he was only four months old.  He has been a mummy's boy throughout.  The only person that he found some comfort in when I'm out at work has been my mom.  But if he continues trying to be a baby, maybe I will let Jianwei take him instead.  When anesthesiologist sees an agitated kid, they tend to use Versed which makes the recovery process slower for Lucas.  He was dazed on Tuesday for a long time.

Lucas takes prednisone as steroids twice a day right after breakfast and dinner for five days.  Then he takes 6-mercaptopurine every evening.  Since he has been having poor appetite and losing weight, we have been feeding him around the clock and he was surely not taking no food after dinner very well.  Hopefully he will get used to it as heeds to take the drug everyday for the next 2.75 years.

After I read some journals on the Journal of Pediatric Oncology/Hematology and commutators with Jianwei, he wrote to Dr. Pui at St. Jude to ask a few questions concerning us.  Dr. Pui, who has been treating leukemia in kids for the last three decades and well respected, is also very responsive to our emails (more so than our own doctor).  He told us that many Chinese descent kids do not handle full dose of 6-mercaptopurine well and need to be adjusted to two-thirds of the dose.

Started long term maintenance today

ANC was 1350 last Thursday and 1836 today.  Went to clinic today for a chat with doctor, blood drawn for liver panel, and Vincristine.  Will go there 6:30 tomorrow morning for lumbar puncture.  I asked about more frequent check on CBC and liver functions and possibly a check on IGG level.  Our doctor is very good at easing my nerve with credible scientific answers.  So I came home with a CBC in two weeks while most kids will be checked once every four weeks.  And we would decide when to check liver panels again based in the results we get today.

We took Lucas to Costco last Friday -- his first time out since diagnosis!  My cousins arrived Sunday and we were a gang of people going to the clinic today.  Lucas had always asked to eat in the patio area of the hospital cafeteria and his wishes were granted today, eating with seven of his extended family members!  It was a little stressful since my young cousins are like big kids themselves and I felt like I had to take care of them.  But overall we had a good day.