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.