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.

7-29-09 ER Visit

Came home from work Tuesday afternoon & found out that Chase is running a fever. His temp that time is around 100 F. I did not worry because he was still active. I left him in the room & went downstairs to have dinner. I just heard Wenn yelling my name because Chase is on the stairs steps with his face covered in blood. Everyone panicked. We managed to stop the bleeding in a few minutes. I called the hem./onc doctor on call (because it was after 5pm) and described what happened. I knew that the bleeding was not because of low platelets because his platelet count last Monday was normal. I don't think he bump into something because I did not hear him cry. We were instructed by the doctor to wait & re-check his temp in an hour and go to the ER if it is 100.3F & above. Well, it was high.
We arrived at CHLA before 10:30 PM. We went through the same routine. Chase was hysterrical when they were accessing his Port. His heart rate was at 159 bpm when they checked in the Triage. He was sleeping at that time. So, the doctor ordered some IV fluids because dehydration can cause an elevated rate. After 3-1/2 hours of wait in the room, we were told that his white blood count was good. So, they will just gave him some IV antibiotics (Ceftriaxone) and will send us home. We did not leave the hospital till 3:00 am.

7-27-09 Chemo Day

Chase's counts are all good. His ALT & AST levels went down as well. Thank God! So, he was able to get his last dose of Chemo for Interim Maintenance (Vincristine & Methotrexate). The next phase of treatment is called Delayed Intensification and will start on August 10. It will run for approx. 2 months. I know he will be receiving some new Chemo drugs & will start on the dreaded Dexamethasone ( Steroids ). He will also have another Lumbar Puncture that day.
I will give more information on what this phase entails. But, from what I read on the other blogs, He will have low ANC and will need to wear masks all the time. Also, might need some transfusions as well. Please pray for Chase as the next phase will be intensed!

Doctor's Appt. 7-20-09

Another long day at the clinic. We got there at 12:30 PM. Our doctor's appt. is at 1:30. But, we need to be there an hour before for labs. After Triage (this is where his vitals are checked), we went straight to one of the rooms in the clinic. Of course. this is because he tested positive of VRE. He needs to be isolated. No more waiting in the registration, playroom.

Chase was already asleep when Dr. Freyer came in. He told us that his counts are good and will receive his chemo treatment. But, he will not to increase his Methotrexate dose because of the mouth sore last week. We waited in that small room till 6:00 pm before the nurse came back with his Zofran. After another 20 mins., another nurse came back & explained the cause of the delay & that they have not forgotten us. I am not sure what time we saw the doctor. I just know we were in that room for a very long time.

Chase's ALT & AST were very high and they informed Dr. Freyer. The nurse told us that he did not see Chase's blood chemistry earlier when he ordered the medicines. So, They were waiting for him to call them back.

ALT is 816 U/L = normal is 0 - 45 U/L

AST is 325 U/L = normal is 0 - 40 U/L

So, when the nurse came back, she informed us that there is a change of plans. NO CHEMO today, no medicines ( bactrim, etc.) this week & will go back on Monday and will another CBC. They suspect that this increase in enzyme was caused by the chemo he is getting. Hoping that without medicines this week, the numbers will go down a bit to confirm that it is drug/medication induced.

This was supposed to be the last Chemo for Interim Maintenance. We will have to wait & see next week.

Today's counts : 7/15/09 Counts:

WBC - 4.14K 5.79K

HGB - 11.8 12

PLTE - 198K/UL 123K/UL

ANC - 1.6 3.47

ALT - 816U/L 809U/L

AST - 325U/L 300U/L

Pictures

This is how his port looks when accessed

Photo taken last week at Maddy's B-day party. As you can see, he lost

all the weight he gained because of steroids.

However, he will start another round of Steroids for 14 days in 2 weeks or so.

Grrr!!