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.