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!!

Urgent Care visit 07-15-09

When they took off the tape on where his PICC line was placed, Chase's skin was really red & irritated. Some part of his skin also came off. Last Monday, I noticed that the wound has not healed & looked like it is getting worse. Also, he has a dark spot on his lower right eye that looks like a bruise. So, I emailed a photo to our case nurse manager the next day. As expected, the doctor wants us to go to the urgent care and have it checked.
When I got home from work on Tuesday, Mom told me that he was very cranky, barely ate the whole day & was drooling. I suspected that he has a mouth sore. But, he won't let us check his mouth.
We arrived at CHLA at noon on Wednesday. Chase was crying really hard & would not cooperate. It took 3 people to hold him down. The doctor was able to see inside his mouth & saw a sore. It was caused by his chemo Methotrexate especially when given at a higher dose. She ordered a CBC to check if he is Neutropenic & Urine test to check for his VRE. She was concerned that if his ANC is low, he is very susceptible to infection because of the open sore. They also gave Chase IV fluids because he did not want to eat or drink in the morning.
His blood results came in & the good news is that he is not Neutropenic. Chase was prescribed some Lidocaine that we can put on the sore so that he can eat and drink. I thought this will be a quick visit.But, It still took us 4 hours.

Doctor's Appt.

Actual date: July 9, 2009

After a long day day at the hospital for his surgery, we saw Dr. Freyer the next day for a consult & chemotherapy. They did not do a CBC because they just took it yesterday. His counts are really good so they increase his dose of Methotrexate. Today is also they first time they accessed his Port. Our nurses did not know that his PICC came off so when his meds were ready, we had to wait another 45 minutes because they applied emla cream to numbed the site. He was given zofran, vincristine & methotrexate. It was another long day at the clinic. We were the last one out at 6:30 pm.

Quick note: Chase has another round of Chemo on June 20. This is the last for Interim Maintenance and we get a couple of weeks rest & off to Delayed Intensification!

Photo of needle used in Lumbar Puncture

I saw this photo on one of the blogs I follow. This is the picture of the needle they use during Lumbar Puncture or Spinal Tap. Also, the other photo shows where it is inserted.

Port Surgery & Lumbar Puncture

We were scheduled for a port placement, Picc line removal & lumbar puncture with chemotherapy last Wednesday. The OR admitting called me on Tuesday & said that Chase is scheduled for surgery at 5:15 PM. He has a late schedule because he has VRE. He needs to be in isolation & the last patient in the OR. Yes, they did not make a mistake. It is 5:15 PM. I freaked out. Because it means, no solid foods including milk after midnight and clear liquids only (water, juice) before 2 PM. For those of you who do not know, Chase does not drink Juice. Giving him juice is like giving him medicine. He can live without other solid foods. But, he needs MILK. How can I explain to a 2-1/2 year old that he can't have MILK? I called our nurse case manager and tried to get a re-schedule. But, she said that they can't do anything because he has VRE.
Vancomycin-resistant enterococci (VRE) are a type of bacteria called enterococci that have developed resistance to many antibiotics, especially vancomycin. Enterococci bacteria live in our intestines and on our skin, usually without causing problems.
Enterococci bacteria become a problem when they cause infection. These infections can occur anywhere in the body. Some common sites include the intestines, the urinary tract, and wounds. For some people, especially those who are weak or ill, these infections can become serious.
Vancomycin-resistant enterococci infections are treated with antibiotics-the types of medicines that are normally used to kill bacteria. VRE infections are more difficult to treat than other infections with enterococci because fewer antibiotics are effective against the bacteria. VRE, like many bacteria, can be spread from one person to another through casual contact or through contaminated objects. Most often, VRE is spread from the hands of a health professional to a patient in a hospital or other health care setting. VRE is not usually spread through the air like the common cold or flu virus unless you have VRE pneumonia and are coughing, which is rare.
If you are healthy, your chances of getting VRE are very low. Even if you have been exposed to VRE, or have VRE in your body, you are not likely to get an infection. VRE infections generally only occur among people who have weakened immune systems, such as people with long-term illnesses or people who have had major surgery or other medical procedures and have been treated with multiple antibiotics
I gave Chase milk at midnight to make sure he is full. I got a call in the morning from admitting & asked us to come in earlier. They told me they will try to take him in earlier. So, we went and was in OR admitting room from 10am to 5pm. Chase was really unhappy. He cried several times asking for milk & just fell asleep crying. Imagine being in a small room for 7 hours and doing nothing. He did not eat or drink the whole time. They called us up to OR Pre-OP room at 5pm. We stayed there for an hour. I'm glad there was TV to at least cheer him up. But, he would still cry and ask for milk. He did not cry hard. I think he does not have energy at that point. He has not taken anything in for 18 hours.
Surgery was 2 hours long. We had dinner and waited in the cafeteria. The pager vibrated & we hurried to the recovery room. Chase was already awake when we got there. He was crying hard and the nurse was trying to soothe him. He did not stop crying till I took him from the nurse. In his past procedures, he was always asleep when we get to the recovery room.
Surgery went well. We left the hospital at 8:25 pm. We missed the doctor's appointment today and was re-scheduled for tomorrow noon. So, another day in the hospital. I will post a picture of his Port soon.

Chemo day report 06-29-09

Chase's count last Monday were good. His ANC was down to 870 from 1670 10 days before. His hemoglobin was at 11+. Although his numbers were a bit down, he was able to get Methotrexate because his ANC was above 750. He was also given Vincristine. He was crying a lot for the PICC dressing change. I am looking forward for the Port placement next Wednesday.