Saturday, March 26, 2011

Updates, updates, updates... looked like I deserted this blog for almost 2 months!!!  Sorry, I've been really lazy.
So many things to update.. maybe I will use bullets to organize the updates, LOL.

1.  Jason's chemotherapy is going well.  He just finished the cycle #7 last Thursday.  Well, he couldn't totally finish it because Jason got a cold.  We had to call it off after week 3 of the cycle because Jason's cold was still lingering aroud.  Finally, 1 more cycle of chemotherapy and Jason will COMPLETE  the chemotherapy.  It was started 1st week of February 2010, so it took almost 15 months to complete.  Jason is getting  a one week break from the chemotherapy and will start the last cycle on 4/7/11.

2.  Like I said in #1, Jason had a cold and of course fever, so he had to get a iv antibiotic therapy for 2 days.  Fever during a chemotherapy when white blood cell counts are low could mean a potential for a serious infection.  It's called neutropenic fever or febrile neutropenia.  Luckily, his ANC was not below 500 for him to be admitted in the hospital.  Doctors said it is ok for him to get 2 days of iv antibiotic therapy as an outpatient.   I think Jason got sick when we invited a few families for a dinner.  One family brought their daughter who was running a high fever and pretty sick....=(.... no good...=(

3.  I don't know if I ever mentioned that Jason has been drinking water like crazy for the past 1 year or so...I was so worried that he might have DI (diabetes insipidus) and his doctors tried to test for this last April but we couldn't get a definite result.  Diabetes insipidus is a condition where one's body excretes large amount of very dilute urine and causes excessive thirst (therefore excessive drinking water).  Anyways, this problem has gotten really worse lately, and Jason was drinking way too much water (almost 2.5 liters of water a day!!) and peeing way too much (leaky diapers everyday!!) and whenever he couldn't get water he would get really fussy, and he always woke up in the middle of the night several time to fuss for water.  Well 2 weeks ago, we tested him again for DI and the result showed that he has a partial DI.  So he was started on a hormone called desmopressin which made such a big difference!  He doesn't drink water too much any more, he doesn't make crazy amount of pee any more, and most of all, he finally sleeps through the night without waking up!!!  We are very happy.!!!!   Well, also, he was diagnosed with hypothyroidism at the same time... so he's on thyroid hormone, too.

4.  What's next?  hmm... well.. we went to Kennedy Krieger Institute in January for feeding therapy evaluation.  Last year, he was seen by them and they had recommended 6-8 weeks of the intensive inpatient feeding therapy.. but then he was diagnosed with the brain tumor so it was put on hold...
This time, they recommended either intensive inpatient therapy or intensive outpatient therapy.  The only difference is that for inpatient therapy, we need to be admitted in the hospital for the whole 6-8 weeks for the treatment.  For the outpatient therapy, the therapy will be on Monday through Friday, between 8am to 5 pm, and we have to commute to KKI in Baltimore everyday for 6-8 weeks.  The intensity of the treatment is about the same...But there is a long waiting list for this program.  So starting May 2011, Jason will be seen by OT at KKI weekly to start feeding therapy until a spot comes up for Jason for the intensive feeding therapy.  Hopefully, some time during this summer, Jason will be in the intensive feeding therapy program and will start eating some foods.

Well, I will post other updates later.. =)
Jason in stroller, waiting for his chemotherapy
Jason in school, ^^

Jason sitting in his new armchair