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.