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.