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.

6-19-09 Appointment

Today is the 2nd Chemotherapy for IM (Interim Maintenance). He will be given IV Vincristine & Methotrexate thru his PICC. For each treatment, the dosage of MTX increases and is COUNT dependent. To receive any treatment his ANC should be greater than or equal to 750 and 75,000 platlets. BUT if his numbers are low, then the MTX will NOT be increased. His counts are all good so he received a higher dose of MTX. Common side effects are mouth sores & nausea. They gave him zofran tablet prior to the Chemo. But since it's crushed tablet, I don't know if he took anything in.

We also saw Dr. Freyer today. We have not seen him for almost a month so he was really surprised that Chase still have a full head of hair. He said that only 5% of the kids with the same protocol have hair at this point of therapy. We asked him what the indication is & he told us that it does not have any impact on the outcome. Well, that's good to hear. I am wondering why he always belong to the special category. I still hope & pray that he does not fall to the small percentage group that relapses.

We also talked about replacing his PICC line with a Port-a-cath. This device is placed under the skin, in upper part of the chest. It has a small reservoir that is connected to a major vein inside the chest. This device facilitates administration of chemotherapy into the venous system. It still has risks of infection but less than PICC. It requires surgery. But, no flushing and dressing change needed. He can also take a normal bath & swim. Chase will have this surgery sometime July at the same time as his Lumbar Puncture. Also, Dr. Freyer said that it is better to do it sooner rather than later because the next stage of his treatment is "Delayed Intensification". The name says it all.

No NG tube too! Dr. Freyer wants us to still try giving him meds orally and hope that he gets used to it before he takes oral chemo again.

We're in Interim Maintenance

Chase is officially on Interim Maintenance last Monday. This is the third phase of his treatment and will run for 41 days. The three Chemotheraphy drugs on this phase is Methotrexate, Vincristine & Methotrexate LP. The first two will be given in his PICC & the latter thru spinal tap or LP. He was able to get the first dosage because his counts are good. Also, another good news is we do not have any oral chemo drugs to give at home. His NG tube came out last Sunday. So, we decided not to put it back in. We will try to give him the fluconazole & Bactrim by mouth this week. I hope he takes it . If not, the NG tube will be placed next week.

WBC - 3.32K/ul
HGB - 10.6g/dl
PLTE- 228K/ul
ANC- 1.66

His urine test also showed some signs of bacteria. But, the doctor is not sure if the sample was just contaminated. They took another urine sample. The results came in today. It is positive of bacteria again. We are just waiting to find out what organism so that they can treat appropriately.