Still in the hospital

Just a quick update:

We're still here in the hospital. Chase has been fever free since Saturday. He is still wheezing & needs breathing treatment every 3 hours now. They switched from Albuterol to Xopinex because of his heart rate. It went over 180+ when he was using the first. His oxygen level also drops when he is asleep. So, they are giving him oxygen as well. The doctors put him on Tamiflu just to be in the safe side because of his symptoms. We are still unsure when we will be sent home.

Fever again....

Just a quick update. I am in the ER writing this. Fever again! This is the 3rd time this month. We are waiting for the hem/onc doctor whether or not we stay or go home. Of course, we prefer the latter.

Just to back track on how our week went. We were in the outpatient clinic on Monday to change his port access & for labs. Results were good. ANC was at 1.6. He was doing good except he lost his appetite. On Wednesday morning, he woke up with a fever. Chase was still asleep when we left for work. We were still on the road & I got a call from mom that Chase's temp is 101.7. I did not panic. Since we were just a few miles from work, I went to work in the morning & called the clinic from there. As expected, they asked us to come in at 10am. They took blood for labs & for cultures. His labs were still ok. But, was a bit lower compared to Monday's. ANC is now at 1.3, HGB is at 8.7. We were sent home after antibiotics. He did not have any fever on Thursday. But, started coughing and has a runny nose. Today, he was weaker & was cranky. His Temp started to climb up by 5pm. It was 38.5 at 6pm. We went to the ER tonight. His labs are lower as expected. ANC is now 700, HGB is 7.7. His heartrate is also up. They took x-ray & glad that it was negative for pneumonia. He received albuterol treatment for his wheezing. It's 12:47 am & still unsure of what their plan is.

This week's update

Chase is feeling better compared to the first week of Steroids. Giving the ARA-C was easy. But, the 6-TG is a problem. Knowing that he can't have any dairy with this, mixing with milk was out of the question. During the first night, we crushed the pill and added a small amout of chocolate syrup. It was just enough to cover the powder on a spoon. It was about half teaspoonful. After an hour of crying, time out and spitting, he swallowed. We were glad & thought we could use this trick again. But, he struggled more & has not cooperated since. We tried soy milk which I am not sure if it has Xanthine Oxidase, the enzyme that interferes with 6-TG. I also bought the rice milk. He did not like that either. So, we are back on using a syringe and forcing it on him. I can't understand how he still manages to spit it out if the amount is less than 2 ml with thick consistency. It also does not help when he sees us with mask and gloves.

We are due back in the clinic on Monday for a dressing change. He will also start another 4 rounds of Ara-C. Dr. Freyer said that we should expect his counts to drop starting next week.
Please pray that he does not get sick because it will be another hospital admission.

9-14-09 Appt.

Actual Date: 09-14-09
We finally started the next phase of DI last Monday. Chase was scheduled for an LP and received a new chemo called Cytoxan. We were there before 8 am. His labs are good. ANC was over 1000. Chase was called into surgery a little bit after 10. This was a great improvement from the last schedule. They started his IV fluids in the recovery room. Nurses mentioned that he needs to have 4 hours of IV fluids before & after the Chemo. They will check the gravity of his urine prior to giving the chemo. They will not start it unless he is fully hydrated. And since he was without any food & water since midnight due to his surgery, he needed a lot of fluids.

We have 2 chemo's to give at home. Ara-C that is injected to his port and 6-TG, a pill taken by mouth. They left his port access open this week. Before ARA-C, we need to give him zofran for help with nausea. It is also a pill. But, it dissolves in mouth. We were never successful with this pill in the clinic. It always lands on the floor. The nurse taught us how to administer the ARA-C. It is similar to flushing the port. But, I need to push the chemo for over a minute. 6-TG should be taken on an empty stomach. Should be given 2 hours after a meal and no dairy products within that time as well. Also, no meal or dairy after 1 to 2 hours after. We left the clinic at 8PM. The last one out again & the longest stay so far.

What to expect on this phase:
Low Blood Counts
Fatigue
Loss of Appetite

We are hoping no fever this time.

We're home

His ANC went up to 230 today. We're home. Chemo for this week is cancelled due to his low ANC. He's still eating a lot and is sleeping more. We'll have to wait & see what the next phase entails.

Update

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We are hoping to get discharged tomorrow. His ANC today is 80. So, it looks like it is on an upward trend now. He was feeling great the whole day too.

We cut his hair too. It was making so much mess.

Still here. ANC=20

Can't seem to get rid of that number. We were hoping that his ANC has climbed up today. But, it stayed at 20 like yesterday. If you think of it, it did not go down. So, might be a good sign that it will trend up tomorrow. He had a low grade fever last night & this morning.

We are also out of the BMT unit. This afternoon, we were transferred to 4 East when a room has opened. Room 413East. This was the same room we were at in the beginning. The room where we cried finding out about his diagnosis. I'm having flashbacks.........

We're anxious to find out tomorrow's number. I will update again.

Photo taken 9-5-09

He's close to being bald. We will shave it off when get home.

It just looks messy right now.

9-5-09

Update from this morning. ANC= 20. It is almost zero 0. It means Chase is very neutropenic. He cannot fight infections, if any. They will still keep us in the hospital.

What is neutropenia?
"Neutropenia" is a condition in which the number of neutrophils in the bloodstream is decreased. Neutrophils are a type of white blood cell also known as polymorphonuclear leukocytes or PMNs. Neutropenia affects the body's ability to fight off infections.

How is neutropenia defined?
The white blood cell count (WBC) is the number of white blood cells in a volume of blood. The normal range for the WBC varies slightly among laboratories but is generally between 4,300 and 10,800 cells per microliter or cubic millimeter (cmm). The WBC can also be referred to as the leukocyte count and can be expressed in international units as 4.3 x 109to 10.8 x 109 cells per liter. The percentage of the different types of white blood cells in the WBC is called the WBC differential.
The absolute neutrophil count (ANC) is determined by the product of the white blood cell count (WBC) and the fraction of neutrophils among the white blood cells as determined by the WBC differential analysis. For example, if the WBC is 10,000 per microliter and 70% are neutrophils, the ANC would be 7,000 per microliter.
An ANC of less than 1500 per microliter (1500/microL) is the generally accepted definition of neutropenia. Neutropenia is sometimes further classified as:
mild if the ANC ranges from 1000-1500/microL,
moderate with an ANC of 500-1000/microL, and
severe if the ANC is below 500/microL.

9-4-09 The Plan

Today, were told that we will be released on the following conditions:
1. No fever in 48 hours
2. ANC count is on rising trend


We got the first condition resolved. Just waiting for his ANC to go up.
However, when we received his ANC today. ANC=100. It was 20 pts. lower than yesterday.

9-3-09 Fever and Hospital admission

Chase had a low grade fever last Wednesday, 9/2. It was about 99.6 or so in the afternooon & about 100.7 at night. His temp was was hovering at that range. But, not higher. I called the hem/onc doctor and advised us to go to the ED. I took his temp again after preparing our things for the hospital. It went down to 99. So, we decided not to take him in.

It was the same scenario on Thursday. The hem/onc nurse called me at work & asking about Chase because they received a note from the doctor last night. I explained that we did not take him to the ED because the fever went down. By the time I came home, his temp is slowly rising. From 99.6 to the low 100's. We took him to the ED and his temp at the Triage was 100.2. Still, borderline fever. They consider 100.4 as fever.

We got to the ED room by 9:30 pm. I knew it will be a long night. Our average ED stay is 4-5 hours. I was thinking that we'll be home by 2ish after antibiotics. They took his vitals again & his temp was higher at 101.2. We were patiently waiting in the room & shortly before 1 am. We were told that Chase will be admitted due to his ANC=120.

We stayed at the ED while waiting for the room. We got to our room , 425 West BMT unit, at around 5 am. Chase needs to be isolated due to his counts and VRE. There were no available rooms either in the West or East wing. So, we were placed in the BMT unit.

Date picture was taken: 9/3/09

Lost more hair

Photos

Picture taken with Shaun in the car after the 8/31 appt. at CHLA. Chase's face is now really round.

You can now see his bald spots

8/31 Labs and hair update

Actual date: 8/31/09

We went to CHLA in the morning for his labs. His counts checked out ok. All values were lower. But, still ok. No transfusions needed.

WBC: 2.11K/ul
HGB: 11.5 g/l
PLTE: 123K/ul
ANC: 830

We are scheduled for a Lumbar Puncture on Tuesday, Sept. 8 and Chemo & Dr.'s appt on Wednesday, Sept. 9.

We stopped the steroids last Sunday (8/30). But, the side effect lasted the whole week. This round of steroids was really tough. Chase ate like there's no tomorrow. This whole week, He woke up in the middle of the night and requested for food. He woke up at 5 am on Tuesday, 3:30 on Wednesday, 1:30 on Thursday, 12:30 am last Friday morning. He does not go back to sleep until 6 or 7 in the morning. I was dead tired. I was a zombie at work.
By Friday, his face and belly just blew up. His hair started to fall off as well. It fell out in clumps. So, we decided to give him a haircut last Sunday.