This picture was taken in the ER.

Updates

Chase is almost back to his old self. Except for the G-tube and not being as active, he is always in a good mood, smiling & playing. His taste in food also changed. Right now, he's into the fruit cup thing. It's was crazy during induction when he's taking steroids. He was eating everything in sight.

He also started a fever last Thursday. He slept for 6 hours & we knew something was up. When I woke him up, he's already running a temperature. This means another ER trip tonight. We left for the ER at 10 pm. Chase had an IV dose of antibiotics & they took a CBC. We were sent home because his counts were really good. We got home at 4:30 in the morning. His fever continued 0n Friday morning, had a break in the afternoon & came back again at night. I called the hem/onc doctor & knew that we need to go back to the ER. But, we decided not to bring him that night because he was acting fine & was active. This morning, he woke up with a fever. His temp was higher. So, we're back in the ER. His counts are still good & we're just waiting to find out what's next. I will update later.

5-26-09 Procedure

Today is the last LP scheduled for consolidation. Finally, we do not need to get up at 4:30 am to be in the hospital at 6. Chase was in a pretty good mood. He was smiling while watching DORA in the main OR room. His counts are also great. His ANC was 1500+ ( below 500, you are considered Neutropenic & can't be around a lot of people. Ability to fight infection is really low) His lowest that I know of is 180.

05-18-09 Going Home

Finally going home today. Chase had an LP with Chemotherapy (Methotrexate) this morning. He went to the OR at around 7:30 am. The procedure did not take that long. They also put in an NG tube (feeding tube) today. We tried several times to give his medicines orally. But, he spits most of it out. He needs to take this chemo drug Mercaptopurine (6-mp) for 28 days and it is important that he takes in the full dose.

HAIR STARTING TO FALL OFF

Last Wednesday night was the first time I saw some of his hair fall off . I saw a few strands on his pillowcase. I became very emotional. I know that all of his hair will fall off eventually. But, It was just hard to see. It also reminded me that this is CANCER.

The nurses kept saying, he still has a lot of hair. Some thought that he was just diagnosed. 95% of the kids have lost most of their hair at this point in treatment. But, as Dr Freyer said, His hair is as stubborn as he is.

4th day in the hospital

This is our 4th day in the hospital. Finally, Chase has no fever for more than 12 hours now. The Hem/Onc & Infectious disease doctor is now leaning towards viral/bacterial infection rather than fungal infection to his lungs because he is getting better without fungal treatment. THANK YOU GOD!!

His fever was on & off for the past few days. His temp was not as high as Wednesday's. But, they were concerned because it was persistent. Also, his CT Scan result show some cloud in his lungs which alarmed the doctors. They sent tests to check for all possible viral infections too.

Since he is immunosuppressed, he can get fungal infection normal person can't get & it can be very, very dangerous. It can put him on ICU.

He is still getting various antibiotics thru IV day & night. The doctors still want to see him without fever for another 24-48 hours & that means we are not going home tomorrow. The doctors also stressed to us how important for him to take his Bactrim, Fluconazole to help prevent these infections and his Chemotherapy to prevent relapse because they know how Chase is on taking his meds.

In the Hospital

We are officially admitted (05-13-09). We are at 430 B West. This is the same floor where we were the last time. But, on the West side where they have the patients with Solid Tumors. There were no available beds on the East wing. There were 3 beds in the room. This was the only available bed at this time. So, I will be the only one staying with Chase tonight.
Chase's fever was really high. The hospital uses a Tempa-dot which is in celcius. The highest temp on the strip is 40.4 celcius. His overnight temp is at 39 to 4o.4 or higher because the strip was all blue. The nurses brought him in the treatment room to try to give the Tylenol. He was screaming & kicking. They tried, but said he's a smart one. Chase was not able to take anything in so they will just do some cooling measures. They gave me cold compacts & ice. We also wet his hair & undressed him the whole night. His fever spiked again by 2ish so we had to give him a bath in the middle of the night. They gave Chase new antibiotics. Cefepime and Vancomycin.

I will try to add more to this post. Finally, there's 2 bars on the wifi connection so I was able to update. I will try to get some sleep while Chase is sleeping. It's 12:15 am now. PLEASE PRAY FOR CHASE!!! DOCTORS ARE STILL UNSURE WHERE THE FEVER IS COMING FROM.

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05-15-09

His fever is still high but not as high as yesterday's. The nurses had to put a feeding tube because of the fluids with contrast he needs to take for his CT scan. We had to put it in because he will not drink it & it was a lot of fluids. He's been crying because they strapped his hands to prevent him from pulling it out. It took them a while to put it in because he was fighting. Also, the night before, we did not sleep. He started crying at around 2ish & did not stop. He kept on saying ALL DONE & was trying to take his PICC line & IV off. All the nurses in 4 West already heard about his famous line - "ALL DONE".

High fever!!

Just when we got home from the clinic on Tuesday, his fever became higher. His temp now is 102+. I called the hem/onc fellow on call & was told that the antibiotics he received will cover him for 24 hours & that it won't necessarily remove the fever. Also, to give him tylenol, monitor his temp & call if it gets higher. At around midnight, his temp was around 103+. Another night without sleep.

I took him at urgent care at around noon on Wednesday 5-13-09. His temp that time is around 38.7 celcius. We were not seen by the doctor until 2 pm. Becasue of his persistent fever, he thinks that we should be admitted & consulted this with Chase's attendee. The blood & urine cultures from yesterday are still negative. They gave him more antibiotics & tylenol. Also, collected another blood for culture. Later we found out that he will be admitted & was waiting for a room in the hospital. Chase was calm. He was not crying. He just does not want to sit on the bed but preferred to sit on his stroller. As you can see on the picture.

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!