One Year

I can't believe it's been a year. It surely was a roller coaster ride for us & the whole family. I can still vividly remember how that day went. We were clueless. We knew Chase was sick. But, did not thought it could be this. We thought it was just a fever....
We were admitted in CHLA on April 1. Chase still had high fever that day. Our doctor's appt. was at 2pm. Chase was sleeping the whole morning. By noontime, I noticed the red spots in his face. We were not alarmed. We thought it was caused by his high fever... Our lives have changed overnight.

Chase is doing great. Blood counts are NORMAL. It sounds good in a way. But, for a child taking Chemo to suppress his marrow... I am not sure... ANC last Monday was 4400++ It was always been above this level since he started Maintenance. He got vincristine, LP & started another 5 days of steroids. We will still giv Dex through his port & 6-mp orally. They are still monitoring his 6-tg levels. Trend was going down. But,, they said it is still therapeutic. I really need to clarify a lot of things with his doctor...still confused on the values we are getting.

Thank you for praying :)

Still here

I haven't had the chance to update recently. Everything is going great with Chase. except for some hiccups (ER Trip) here & there. We are still going to the hospital weekly for his Methotrexate. His counts are normal values. His ANC over 5000 for a few months now. They are still monitoring his 6-mp blood values every month. So far, it seems that he is getting enough 6-mp. But, why the very high ANC?? hmm... Can't get a straight answer from his oncologist.
Thank you for your continued prayers.

Happy New Year!

We had a wonderful holiday. It was nice to spend time with my family. Chase is also feeling great. I can't believe that it has been 9 months since he was diagnosed. 2009 was certainly an unforgettable year for us.

We had an early appt. at the hospital on Jan. 4. Chase had an LP procedure, doctor's appointment and Vincristine. He also received his first dose of IV Dexamethasone. They left his access open so we can give him his 5 day steroid pulse. We have to give him 2 doses via IV every day for 5 days. As for the weekly Methotrexate, the doctor opted to give it IM (Intramuscular Injection) instead of IV to preserve his port. 6-MP will still be given orally daily. They took extra blood again to check his levels & will make a decision if the values are lower.

His counts are all great. Normal values actually. However, this is a bit tricky since we know that he does not take his chemo regulary. Some kids can get normal values even on chemo. But, this can also mean that he is not getting his needed dose.

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

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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.