9-3-09 Fever and Hospital admission

Chase had a low grade fever last Wednesday, 9/2. It was about 99.6 or so in the afternooon & about 100.7 at night. His temp was was hovering at that range. But, not higher. I called the hem/onc doctor and advised us to go to the ED. I took his temp again after preparing our things for the hospital. It went down to 99. So, we decided not to take him in.

It was the same scenario on Thursday. The hem/onc nurse called me at work & asking about Chase because they received a note from the doctor last night. I explained that we did not take him to the ED because the fever went down. By the time I came home, his temp is slowly rising. From 99.6 to the low 100's. We took him to the ED and his temp at the Triage was 100.2. Still, borderline fever. They consider 100.4 as fever.

We got to the ED room by 9:30 pm. I knew it will be a long night. Our average ED stay is 4-5 hours. I was thinking that we'll be home by 2ish after antibiotics. They took his vitals again & his temp was higher at 101.2. We were patiently waiting in the room & shortly before 1 am. We were told that Chase will be admitted due to his ANC=120.

We stayed at the ED while waiting for the room. We got to our room , 425 West BMT unit, at around 5 am. Chase needs to be isolated due to his counts and VRE. There were no available rooms either in the West or East wing. So, we were placed in the BMT unit.

Date picture was taken: 9/3/09

Lost more hair

Photos

Picture taken with Shaun in the car after the 8/31 appt. at CHLA. Chase's face is now really round.

You can now see his bald spots

8/31 Labs and hair update

Actual date: 8/31/09

We went to CHLA in the morning for his labs. His counts checked out ok. All values were lower. But, still ok. No transfusions needed.

WBC: 2.11K/ul
HGB: 11.5 g/l
PLTE: 123K/ul
ANC: 830

We are scheduled for a Lumbar Puncture on Tuesday, Sept. 8 and Chemo & Dr.'s appt on Wednesday, Sept. 9.

We stopped the steroids last Sunday (8/30). But, the side effect lasted the whole week. This round of steroids was really tough. Chase ate like there's no tomorrow. This whole week, He woke up in the middle of the night and requested for food. He woke up at 5 am on Tuesday, 3:30 on Wednesday, 1:30 on Thursday, 12:30 am last Friday morning. He does not go back to sleep until 6 or 7 in the morning. I was dead tired. I was a zombie at work.
By Friday, his face and belly just blew up. His hair started to fall off as well. It fell out in clumps. So, we decided to give him a haircut last Sunday.

Update

One week ago from today, Steroids wore off & Chase bounced back to his normal self. He took the last Dex last Monday, Aug. 17th at night. We started seeing some improvements in his behavior around Wednesday. We were very happy to have him back. He really is not himself whenever he is taking that disgusting drug. But, I really can't complain because I know this will make him well. We had a good weekend overall.

Actual Date: August 24, 2009

We are starting another round of Dex for 7 days. He took his first dose Monday morning. We had an early Doctor's appointment. We got there right before 8:30am for his 9 am appt. He was still behaved & just cried when he was accessed & de-accessed. He was given Vincristine & Doxorubicin. His labs are still ok. but, was down from last week.

8/17/09 Counts:
WBC - 4.87K/ul
HGB - 13.2g/dl
PLTE - 302K/ul
ANC - 2.88

8/24/09 Counts:
WBC-1.80K/ul
HGB- 12.4 g/dl
PLTE - 103K/ ul
ANC - 1.1

We left the hospital just before 2pm! This was unexpected. But, we were happy to leave early. We have been the last patient out for the past few weeks. We are scheduled to go back on Monday, Aug. 31 at the Day Hospital to check for his labs.

Delayed Intensification Update

It's been a tough, tough week for Chase & us too. He started DI last Monday, August 10. We were in the main hospital at 9am and checked-in at surgical admitting. We were once again isolated due to his VRE. We stayed in the admitting room up to about 3pm then was transferred to the Pre-Op. I managed to keep him busy. He did not scream for milk just like the last time. The procedure was really quick this time. It usually takes them more than 30 minutes before we are called to the recovery room. I guess they were in a rush because we are heading straight to the clinic afterwards. We got to the outpatient clinic just after 4pm. Dr. Freyer gave us an overview of this Phase & told us what to expect. The Delayed Inetnsification is divided in 2 phases. 21 days for each phase. Here is his chemo schedule for the first 21 days.

August 10, 2009
Vincristine (VCR)
Doxorubicin (DOXO)
Methotrexate (MTX) by lumbar puncture Dex

August 11-16
Dex

August 14
Peg Asparaginase - shot in each leg

August 17
Vincristine
Doxorubicin
Dex

August 24
Vincristine
Docorubicin
Dex

August 25-30
Dex

We left he hospital at 7:30 pm. The latest time so far.


We had a hard time giving his Dex. He was able to taste it in his milk & does not want to even hold his bottle. During Induction, He took Dex twice a day, 3-1/2 tablets. We did not have a problem because the milk masked the taste. Right now, since we have to give him 6 tablets in the Morning & 5 tablets at night. The taste of the meds is stronger. He managed to drink it but in several small doses in the morning & at night. (Just found out from the Doctor last Monday that we can't do that. He has to take full dose in AM & PM and not spread around in the AM or PM.)

Steroids started to kick in on Wednesday. Suddenly, a different Chase we saw. He was very irritable, cranky & was crying non-stop. He was not smiling & was very tired. He does not like anybody else except for me. Not even his dad. He was not as hungry as the last time and did not each much as expected. He slept several times during the day & was awake in the middle of the night. That means I am awake too.

We went back to the clinic on 8/14 for his Peg Shots. Chase was very unhappy that we were in the hospital. He was crying non-stop. Same scenario yesterday 8/17 for our clinic appt. Just when we got to the 5th floor, he started yelling and was crying so hard. You can hear his voice throughout the 5th floor.

We discussed our problem with the oral meds with Dr. Freyer. We are suggesting to put back his NG tube. But, he really wants him to learn. Everyone was asking us to speak with Child Life. But, we have. We've tried their suggestions & techniques. One big problem is that his choice of food is very limited. No juice, jello, ice cream, yogurt, pudding, etc. Several nurses also offered to help give his meds in the hospital & no one succeeded. He is really stubborn. We'll have to wait & see how next week is.

Delayed Intensification

Tomorrow we start Delayed Intensification. We are scheduled to be in CHLA at 9:00 am. It will be another long day for us. Chase will have a Lumbar Puncture at the hospital's main hospital & anticipate him to be the last one because of VRE. Also, we have a doctor's appt. to discuss this new treatment phase. I will elaborate more when I have more information this week.