Protocol Update

Wishing all of you a very Merry Christmas!!

From: Edwin, sherry, Sherissa, Shaun & Chase

We had a consult with Dr. Freyer today. His 6-mp metabolite blood result came back good which surprised everybody. The result was for last month's 6-mp dose. For the past 2 weeks, his intake went from bad to worse. He does not like his bottle. So, only option now is to force orally. We are unsure of how much he is taking in especially the Methotrexate. We actually have called the clinic several times to ask what we need to do. We also met with the hospital psychologist this morning to see if they can help us with the situation. After the discussion, she knew how much we tried & will speak with Dr. Freyer before we meet him in the afternoon.

Right now, Dr. Freyer wants us to continue his current meds until Jan. 4 when he gets his LP. Chase will be taken out of the clinical trial. They will change the steroids & methotrexate to IV.

As for the daily 6-mp, we will continue to give orally & will check drug level again on the 4th before making any decisions.

12/7 Doctor's Appointment

Hello Everyone. Doctor's Appt. went well. Dr. Freyer is seriously considering changing Chase's protocol. He's concerned on the amount of chemo he took in this month based on what we reported. For the weekly Methotrexate, he missed twice and only took about half on the other weeks. 6-MP was the same. He missed 4 doses out of the 28. The rest of the time he took in about 50% of the dose & some time he drank half now and half after an hour or so. We did not have his lab results during the consult. So, we were not able to discuss the result further .He just ordered for extra blood to check the level of drug. We have to wait for about a week for the result because they have to send to an outside lab.


The main points in discussion were:

1. Dr. Freyer is very concerned and mentioned that we are increasing his chance of relapse if he continue this pattern.

2. Change his protocol. Changing to IV means taking different chemo besides 6-mp because there's no IV version of the drug. He mentioned maybe Cytoxan & Cyclophosphamide.

pros - no more problem with the oral drug
cons - not widely tested yet. But, mentioned that they had some success on this.

2. Put a G-tube in his stomach. He does not prefer this though.



Right now, he wants us to continue with the meds until our next meeting. He will consult with fellow oncologist in CHLA.

Chase's ANC was actually good. 2900. It was higher than last month though. I will update more after the blood result comes back.




Update on Meds:

We gave his Dex, Methotrexate & 6-Mp last night. It was a huge struggle. He was clinching his teeth closed & threw up after several tries. His cheeks got hand marks because we held it tight trying to keep his mouth open. It was that bad. We gave up & decided not to force it in. We added it to the rice drink. But, he did not drink it.

All is good!

Sometimes no news is good news. Chase is doing well. Except for some cough & runny nose here and there. I'm glad that he did not get any fevers. Shaun had a fever this weekend & was coughing hard. I hope Chase doesn't catch it. We're still having trouble with the oral meds. Will discuss the other option with Dr. Freyer. Holidays are fast approaching. I am so thankful that Chase is doing so well & will be able to enjoy it!

HAPPY THANKSGIVING!!!

11-9 Doctor's Appt

Chase is doing well. He's been active and playful. He's also walking better. Not quite as before yet. But, better.

Monday's appt. was looong. We were there at 10am for the 11 o' clock Doctor's appt. and left past 4pm. His counts are good. WBC is 3.58k/ul, HGB is 10.8g/dl, PLTE is 201k/ul with an ANC of 2.51.

Main topic of conversation with Dr. Freyer is how Chase is doing with his oral meds. He was actually happy with what he heard. He thought it would be worst. He wants us to chart his daily intake and will measure his 6-mp blood concentration next visit. He actually told us that Chase might take a different route if we think he does not take 25% of his oral Chemo. It would be mostly IV meds to be given in the clinic. Details were not yet discussed. We are still hoping that it gets better. Another concern that we brought up is that when the chemo is in his bottle, he does not drink it at once. He would drink the whole thing for a span of an hour or so. We want to know if there is any effect on absorption. He explained to us that in certain meds, a full dose is necessary to reach a certain peak to optimize the effectiveness. But, he is not certain. He did mention that a pill is meant to be taken in one shot. It's really hard at this point. We know the consequence if we don't do this right.

Please Pray

Please pray for the family of Malachi. He earned his angel's wings last week.
caringbridge.com/visit/malachismith

So far so good

We're in the 3rd week of Maintenance. Chase is active and eating well. His hair is growing too!!He is taking his nightly chemo in his bottle mixed with Rice drink. It's been working so far. I've been sick with a bad cold (cough, runny nose & fever) for a week now. The 2 boys now have what I have. It was so hard to stay away from them. Especially with Chase because he is so attached to me. I tried to wear a mask. But, he would pull it out of my face. I just hope for no fevers!!

Holloween was fun. We all went to my sister's house. Shaun dressed up as Bumble Bee from Transformers & Chase was flash. Shaun went out trick or treating. We decided to keep Chase inside the house because of his cough & runny nose. I will post some pics soon.

Update

We went to the ER yesterday afternoon. Chase woke up with a fever. Urgent Care was full so we were directed to the ED. Good news is we were sent home. Chase was not neutropenic so we were not admitted. But, I was surprised to hear that his WBC is 18.44 and his ANC is 15.86. He is definitely fighting an infection. They gave him 2 IV antibiotics & prescribed him Tamiflu.

He is feeling good today. His appetite also came back. We are not struggling with his nightly chemo for now. We managed to mix the 6-mp with Rice Drink. I bought plain soy milk, vanilla soy milk and a rice drink. The latter seemed to work. He drank his bottle with no complains. I tried the soy milk one day & just one sip he knew it was different. So, he tossed it. He was fine except on the first week with steroids. We were all sleep deprived as he does not want to sleep.
He had the same effects the last time.

We are scheduled for labs on Monday. We'll see how his counts are. I'm hoping it would be on the 1.0-1.5 range where he should be at this point.

LTM

His ANC yesterday was at 750 & we were able to start long term maintenance. 750 was the magic number to start & he barely made it. His ANC last week was over 1000 so I thought it would be higher because he was on chemo break. Can't seem to comprehend how it works. He received Vincristine thru his port and a Lumbar puncture. This phase is the longest phase & mainly oral chemos to give at home. A big problem for us. He will take the following medicines.

Dexamethasone - Steroids which makes him so cranky, hungry and his sleeping pattern changes.
Mercaptopurine 6MP - This chemo should be taken on an empty stomach one hour before & no food & dairy 2 hours after. Cannot be combined with Bactrim.
Methotrexate - This is another chemo medicine to be taken every Monday except for spinal tap week. Cannot be combined with Bactrim.
Bactrim - Twice a day, Saturday and Sunday. Twice a week now instead of three times.
No more Fluconazole.

We are scheduled for another cbc in the coming week because the doctor just want to see how his marrow reacts since he started on the borderline ANC level. They will monitor his ANC and will adjust his meds accordingly. They want it to be in 1000-1500 range.

They also gave him a flu shot for seasonal flu.

Maintenance

Counts are in! ANC is 1.12. This means we're officially starting Maintenance tomorrow. We are scheduled for an LP at 7am & Doctor's appt. at 11am. I'm happy we are at this point in therapy. But, a part of me is not looking forward to it. He will be taking more pills at home which I dread as much as he does.

We're home

We went home Wednesday night. After 5 nights at the hospital, we were glad that we're going home. Chase will contnue with Albuterol & will start on pulmicort. Doctor's said that he has Restrictive Airway Disease aka Asthma. He took the last 6-TG last Sunday. The last dose for Delayed Intensification. I'm glad this phase is over. It was really tough on Chase. 2 hospital admissions in September.

I can't believe it's been 6 months now from when he was diagnosed. In two weeks if his counts permits, Chase will be in Long Term Maintenance. This is the longest phase & will last until mid-2012.

Shaun is sick. We are trying to keep Chase away from him. He has a fever for almost a week now. His doctor said that it might be a virus. He gave him some antibiotics as a precaution because he is aware of Chase's condition just in case it is a bacterial infection.

We have an appointment for Labs on Monday to see where his counts are. He is on chemo break until Oct. 12.

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

``

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.

Update

One week ago from today, Steroids wore off & Chase bounced back to his normal self. He took the last Dex last Monday, Aug. 17th at night. We started seeing some improvements in his behavior around Wednesday. We were very happy to have him back. He really is not himself whenever he is taking that disgusting drug. But, I really can't complain because I know this will make him well. We had a good weekend overall.

Actual Date: August 24, 2009

We are starting another round of Dex for 7 days. He took his first dose Monday morning. We had an early Doctor's appointment. We got there right before 8:30am for his 9 am appt. He was still behaved & just cried when he was accessed & de-accessed. He was given Vincristine & Doxorubicin. His labs are still ok. but, was down from last week.

8/17/09 Counts:
WBC - 4.87K/ul
HGB - 13.2g/dl
PLTE - 302K/ul
ANC - 2.88

8/24/09 Counts:
WBC-1.80K/ul
HGB- 12.4 g/dl
PLTE - 103K/ ul
ANC - 1.1

We left the hospital just before 2pm! This was unexpected. But, we were happy to leave early. We have been the last patient out for the past few weeks. We are scheduled to go back on Monday, Aug. 31 at the Day Hospital to check for his labs.

Delayed Intensification Update

It's been a tough, tough week for Chase & us too. He started DI last Monday, August 10. We were in the main hospital at 9am and checked-in at surgical admitting. We were once again isolated due to his VRE. We stayed in the admitting room up to about 3pm then was transferred to the Pre-Op. I managed to keep him busy. He did not scream for milk just like the last time. The procedure was really quick this time. It usually takes them more than 30 minutes before we are called to the recovery room. I guess they were in a rush because we are heading straight to the clinic afterwards. We got to the outpatient clinic just after 4pm. Dr. Freyer gave us an overview of this Phase & told us what to expect. The Delayed Inetnsification is divided in 2 phases. 21 days for each phase. Here is his chemo schedule for the first 21 days.

August 10, 2009
Vincristine (VCR)
Doxorubicin (DOXO)
Methotrexate (MTX) by lumbar puncture Dex

August 11-16
Dex

August 14
Peg Asparaginase - shot in each leg

August 17
Vincristine
Doxorubicin
Dex

August 24
Vincristine
Docorubicin
Dex

August 25-30
Dex

We left he hospital at 7:30 pm. The latest time so far.


We had a hard time giving his Dex. He was able to taste it in his milk & does not want to even hold his bottle. During Induction, He took Dex twice a day, 3-1/2 tablets. We did not have a problem because the milk masked the taste. Right now, since we have to give him 6 tablets in the Morning & 5 tablets at night. The taste of the meds is stronger. He managed to drink it but in several small doses in the morning & at night. (Just found out from the Doctor last Monday that we can't do that. He has to take full dose in AM & PM and not spread around in the AM or PM.)

Steroids started to kick in on Wednesday. Suddenly, a different Chase we saw. He was very irritable, cranky & was crying non-stop. He was not smiling & was very tired. He does not like anybody else except for me. Not even his dad. He was not as hungry as the last time and did not each much as expected. He slept several times during the day & was awake in the middle of the night. That means I am awake too.

We went back to the clinic on 8/14 for his Peg Shots. Chase was very unhappy that we were in the hospital. He was crying non-stop. Same scenario yesterday 8/17 for our clinic appt. Just when we got to the 5th floor, he started yelling and was crying so hard. You can hear his voice throughout the 5th floor.

We discussed our problem with the oral meds with Dr. Freyer. We are suggesting to put back his NG tube. But, he really wants him to learn. Everyone was asking us to speak with Child Life. But, we have. We've tried their suggestions & techniques. One big problem is that his choice of food is very limited. No juice, jello, ice cream, yogurt, pudding, etc. Several nurses also offered to help give his meds in the hospital & no one succeeded. He is really stubborn. We'll have to wait & see how next week is.

Delayed Intensification

Tomorrow we start Delayed Intensification. We are scheduled to be in CHLA at 9:00 am. It will be another long day for us. Chase will have a Lumbar Puncture at the hospital's main hospital & anticipate him to be the last one because of VRE. Also, we have a doctor's appt. to discuss this new treatment phase. I will elaborate more when I have more information this week.

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.

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.

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.

----------------------

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!

4-27-09 Clinic Appt.

We went to CHLA for his regular Monday doctor's appt. & chemotherapy.

As usual, Chase was not happy to be in the hospital. He is a screamer. They changed the dressing of his PICC line, blood work & met with Dr. Freyer. He told us that his weakness is due to the Chemotheraphy. Also, stressed to us to keep him active and to try to give chase more protein & avoid salty foods. Dexamethasone caused his weight gain. Mostly to his face and stomach. He now has a round full face & round belly. This medicine makes him hungry all the time and crave for salty foods.

Another trip to the hospital this week

We just noticed that Chase is having a hard time walking. He is limping & does not want to walk at all. He would cry if you ask him to & would extend his arm for us to carry him instead. I called the hem/onc fellow on call and they want us to come in.

We went to the ER & had him checked. The ER took his vital signs & blood. The hematologist told us that there can be 2 reasons for this.
1. Sign of infection
2. Side effect of the Chemotheraphy - Vincristine or Decadron.

The hematologist checked his leg & hips for swelling & redness, the signs of probable infection. Everything was ok so they sent us home. We were at the ER for 4 hours today. Chase was crying hard just being in the hospital. We would tell the nurses Bye-bye.

4-22-09 day hospital appointment

Chase is still pale & weak. The hospital took blood for test. As expected, his hemoglobin count was lower. It is 6.9 compared to 7.7 last Monday. We were at the hospital for 4 hours today for the blood transfusion. Chase has more color when we left the hospital.

We already know that his Hemoglobin was low yesterday. But, the doctor decided not to give him transfusion to see if it will rise on its own. He became pale & lethargic today so we decided to give the clinic a call. They gave us an appointment for tomorrow and is scheduled for Blood transfusion.

We just finished the second clinic appointment at CHLA. We were there at 11:00 AM for our 12:00 chemotheraphy -Vincristine & a doctor's appt.

They also changed his dressing for PICC line. Chase was crying hysterrically that his nose bled a little bit.
His counts were also low. But, they did not give him transfusions to see if it will rise on its own.

Chase's new haircut!

We finally decided to cut Chase's hair today. I feel really bad because I love his long hair! The doctor already warned us about the increase of appetite. He was not kidding! Chase is always hungry. Look at the proof.

Chubby steriods cheeks.

It was the first Clinic Appointment today. Our appt. is at 6 AM & we made it on time. He is scheduled for Bone Marrow Aspirate & Lumbar Puncture with chemotherapy. He also has a doctor's appt. at 12:30 & another chemotherapy-vincristine after that.
When we got to the clinic, they first drew blood from his PICC line. We found out that his platelet count is only 7,000. So, he needed platelet transfusion prior to the procedure.

It's Chase's 8th day in the hospital. The day went pretty well. He also looked really good. This is the second day he did not have fever! He did not eat much. He only ate a few bites of cinnamon roll, again. We're still struggling on the oral medications. He took zantac, fluconazole, decadron & miralax.
Dr. Freyer came in to see him & said that we might go home tomorrow night after his chemotherapy. It will be injected in his thigh tomorrow. If everything goes well we can go home. Mixed feelings though. I am happy to be home with the family. But, scared that we are out of the hospital and away from immediate care, if necessary.

PICC LINE

Chase got his PICC line today. This will make blood draws so much easier.

First Bone Marrow aspiration & Lumbar Puncture

Chase is scheduled for Lumbar Puncture with Chemotheraphy & Bone Marrow Aspirate & Biopsy today. The night before, we had a conference with our doctor. He confirmed that Chase has Leukemia. He said that just based on his experience & by what he saw in his blood, he is now 100% sure of his diagnosis. So, He asked our permission to administer chemotheraphy while doing the LP.

A lumbar puncture or spinal tap is performed to see if there are cancer cells or an infection in the fluid around the brain and spinal cord. A test called a bone marrow aspirate is done to see if cells in the bone marrow are healthy. Bone marrow is the liquid/spongy part inside bone, where blood cells are made. For this test, a needle is placed in a bone (usually the hipbone) and a small amount of bone marrow is pulled into a syringe. While a bone marrow aspirate is performed to look at the blood cells in the bone marrow, a bone marrow biopsy is used to study an actual piece of the bone. It may be completed at the same time as a bone marrow aspirate.

Chase was not allowed to drink or eat anything after midnight. Chase was crying so hard in the morning because he wanted to drink his milk or water. While he was in surgery, we ( my mom, my 2 sisters & wenn ) waited anxiously in the waiting room. The procedure went well. We are just waiting for the result of his Biopsy to find out the kind of Leukemia.

Later that day, Dr. Baskin, the fellow, talked to us and said that the Biopsy showed the Leukemia cells & they confirmed that he has ACUTE LYMPHOBLASTIC LEUKEMIA (ALL).

First Day at the hospital

We got to our room (413A East) at around 8PM last night after a long afternoon in the ER. The resident Pediatrician first asked us to describe Chase's health history prior to today. I knew it was going to be a long night. Chase still has high fever. They gave him some Tylenol, Antibiotic thru IV. They also gave him blood transfusion twice. Four hours per transfusion so we were awake almost all night. Nurses came in and out of our room.

Dr. Huang, his pediatrician, called me. He said that he received the results and asked me if they said anything yet. I told him that they said that it might be leukemia or might just be an infection. They cannot tell until he has a bone marrow biopsy. He was straight forward and told me that based on what he saw on results, it is leukemia. Also mentioned to me that they put us in the 4th floor east, which is the oncology floor.

Background Story

Chase began to feel sick about 2 weeks from the date he was diagnosed with Leukemia. It all started on March 15, where Chase fell & had a concussion on his head. He cried so hard that he held his breath and made him unconscious for a minute. We were terrified. He fell asleep right after so we decided not to bring him to the ER that night. We took him to see his pediatrician the next day for a check-up. They said that the bumps on his head were healing fine & it was a breath holding spell that made him unconscious.
Chase got sick a few days after. We thought it was because of the fall. He became pale & showed signs of fatigue. His body temperature also seemed higher than normal but he did not get the fever until March 28. His fever would run from 100 -104 & would not go down. We took him to see his doctor on March 30 and our main concern was a head injury. The doctor ordered a CT scan. We went home relieved that he'll get a CT scan. From then on, his fever is not going down. We decided to take him back to the doctor on April 1st. By mid-day, we noticed some pin point red spots on his face but it was not a major concern for us at that time. However, the doctor thought otherwise. He said that it can be a sign of an illness & it is time to go to the hospital. The red spots are called Petechiae. He gave us a note for the ER & spoke with one of the doctors & told us that they are expecting us. He also mentioned before we left that he wants to be straight forward that it is also a symptom of LEUKEMIA.
At Children's Hospital, they took a lot of blood for testing & gave him some fluids thru IV a few minutes after. They also asked me for the complete background & symptoms. Chase was crying hysterically. We waited in the room hoping to go home that night. Until the ER doctor came in & told us that he will be admitted & that it might be Leukemia. I was shocked & devastated but still hoping that it is just an infection.