Visit to CHLA Urgent Care

Chase continues to have low grade fever since last night so we took him back to the clinic for another round of antibiotics. The blood culture from yesterday came out negative. They took another blood for culture because of the continued fever. They also took urine samples for testing. We were sent home after since his counts are still good.

5-11-09 Procedure

Chase had another Lumbar Puncture with Chemotherapy (Methotrexate) today. This is the 2nd of the 4 doses for this month. We arrived at CHLA few minutes past 6 am. We told the nurse practitioner & doctor that he had a low grade fever (100.4) last night. They questioned us why we did not call. I am just confused on the different information given by the nurses at Urgent care. They still went ahead with the procedure because his counts were really good.


We went to the clinic right after for our 9:30 am appt. with Dr. Freyer. We informed him that we decided to enroll chase in the clinical trial. We went back to the waiting room for the randomization result & medicines. Dr. Freyer called us back & informed us that the information he explained & trial we signed for (SR-Low) was not actually for chase. He thought that chase falls into the Standard- Low risk group. But, actually he is at Standard- Average risk group when he took his chromosomes result into account. He does not have the favorable chromosomes to classify him as standard - low risk.

After an hour or so, we were informed that he was randomized to Standard protocol. They changed his dressing, gave him his chemotherapy (Vincristine) through his PICC and antibiotics because of the fever. They also took blood for culture.

Chase finally smiles!

Finally, Chase smiled today!!! We have not seen him smile since he was diagnosed. He used to be very playful & smiled a lot.

He stopped dexamethosone last Sunday. Could it be the steroids? Doctor said that this medicine can cause mood changes, overeating, moon face, weight gain. He had all of it.

5-5-09 Chase has low grade fever

Yesterday's news was really great! Also, no chemo drug today. I just need to give him
fluconazole. By mid day, Chase felt warmer than usual. I took his temperature & it was at 100.1.
When we were discharged from the hospital. They told us not to medicate any fever do I just
monitored his temp the whole day. It was fluctuating & ranged from 99.4 to 100.7
I called the hem/onc clinic & they told me to just monitor the temp & bring him to the ER if his temp. reached 101.5. I called after 5 & spoke with the hem/onc doctor on call just to ask about his breathing. He was breathing heavily too & I thought it was because of the low grade fever.
We were asked to go to the ER.

They took blood, urine, X-ray & administered IV. Chase was crying. But, he was calm at times & it was unexpected. We were there for some time. His results came in negative. No sign of infection. But, Doctor told us that his colon is really full of stool & it is now pushing against his lungs to cause the difficulty in breathing. Normally, they would do an enema. But, they cannot do that due to his illness. They gave him some antibiotics thru IV & just asked us to continue with iralax & Magnesium citrate. This was really strange because he is going everyday even twice or thrice a day. Also, he had diarrhea over the weekend. Anyway, we're just glad that he did not have any infection & glad that we're going home even at 1:00 in the morning.

5-4-09 Procedure & Doctor's Appt.

Chase had Bone Marrow Aspiration & LP with chemotherapy today. We had a very tough night. He can't have any food or milk after 12 because of the procedure. We knew it's going to be a problem because of his appetite. We put him to bed and gave him milk just before midnight to make sure he is full & hoping that he will sleep through the night. He woke up at 2:30 and was crying till 4:30 am when it's just about time to get ready.

His counts were good & did not need any transfusion prior to the procedure. We can't wait to get the result this afternoon. Our doctor's appt. is at 3 pm. So, we grab lunch & came back in the afternoon.

The firsts words Doctor Freyer said to us was, I HAVE GOOD NEWS. CHASE IS ON REMISSION. Yay!!! Thank you God!!

Remission is when a patient's blood count return to normal & bone marrow samples show no signs of disease. (less than 5% of cells are leukemia cells) Remission can either be complete or partial. When cancer is complete remission, all the signs and symptoms of the disease disapper. Partial remission is when cancer shrinks but does not completely disapper. Remissions can last anywhere from several weeks to years. Complete remissions may continue for years and considered cured.

Chase still has about 2.9 years of chemo treatment because with leukemia there can be sleeper cells that are undetected that can "wake up". He will start Consolidation phase on Monday. This phase is to kill any remaining leukemia cells and extend remission period as long as possible. He has a whole week without Chemo! Finally, off with the dexamethosone. He will get new chemotherapy drugs by Monday.

Another issue we had to discuss with his doctor is regarding the next stage of the Clinical Trial. We agreed to enroll Chase in a Ccinical trial. All of the participants received the standard protocol in the induction phase. However, If we decide to enroll him again, there will be a randomization process in the next phase. He might receive either the standard or experimental protocol. The only difference is that there are 4 more doses of Peg-Asperigenase on the latter. Since the standard protocol does not heal all patients, the latter aims to heal all ALL patients and have longer remission. We have until Monday to decide if we will continue Chase with the trial.

Thank you for your continued prayers!