Neutropenic again

Olivia had her blood counts done yesterday,  1 week after being discharged from the hospital. She left the hospital last week with an ANC of 544 (normal is 1500). We were hoping that by this time her counts would go up to the thousands since the last episode, her counts went back up within a week. Surprisingly her counts went down again. Though her red blood counts are good, her ANC is now down to 288. She looks pretty healthy and active though so we don't want to worry too much. We are actually surprised that she has been eating well even without the appetite boost from her steroids.  She has been on chemo hold for 2 weeks now and because her counts are still low, chemo will continue to be on hold until we go back for another blood count next Friday. Sometimes I don't know how I feel about chemotherapy. It's good that it kills cancer cells but I don't like that it also damages the good cells causing her blood counts to go down. I worry that if she is not getting the dosage she needs as part of the protocol that there is higher risk for a relapse. At the same time I wouldn't want for her body to continue getting these toxic medication if it would mean her health is jeopardized.

Olivia's last fever/neutropenia episode made her stop chemo for 2 weeks. I remember that when she started chemo again, we noticed that her body had a difficult time adjusting to chemo again. Especially with the steroids where mood swings were really bad. This time we know for sure that her chemo is on hold for at least 3 weeks. I just hope her body would adjust fairly well once chemo resumes. Praying that her counts go back up to the thousands next week.

Home at last!

Olivia was finally able to come home on Friday night! Though an ANC of 544 is still considered neutropenic, she is on the right track and will only get better in a few days. She is scheduled for a follow up check up next Friday to see how her ANC levels are. Her oral chemo will continue to be on hold until we know the results of her blood counts next week.

Based on what we were told the last time Olivia was hospitalized,  it takes 2 episodes of fever/neutropenia before the doctors lower the dosage of chemo. We will know more next week if there will be a change in Olivia's protocol.

Day 6 at the Hospital

Olivia has been fever free for a few days now. Her red blood count went back up to 11, which is her normal count during the maintenance phase. The only thing that the doctors were waiting on before sending her home is that her ANC goes up. She is still coughing but it is slowly getting better. For the past couple days, her ANC has been going up and down, but still below 200. Today on her 6th day at the hospital, her ANC improved significantly at 544! I think she will be going home today! We are just waiting for her doctor's final decision.

I got the chance to visit her as soon as I got discharged from my hospital stay 2 days ago. So nice to spend even just a few minutes with her! She understands that I needed to come home with her baby sister. She is the sweetest!

I really hope she gets to go home today. Miss her so much!

Medical update

Olivia had a successful blood transfusion on Sunday night. It brought her red blood count to 10.5. Her ANC on Monday morning went up to 200. This morning, her ANC went down again to 125. Last fever was Monday afternoon so it's been 24 hours that she is fever free. She still cannot get discharged however because of her ANC levels. Her ANC needs to be at least 400-500, or at least trending to get close to that level. She is most likely fighting an upper respiratory infection. Her cough is still bad, but her lungs are clear. Her body just needs to fight this infection and recover on her own. Her chemo was held beginning Sunday and just like last month, she will have to continue holding off on chemo until her counts improve.

Other than that, she has been in good spirits and very motivated to get better so she can see her baby sister. She is so proud to be a big sister, telling everyone at the hospital about her baby sister. I haven't seen Olivia for 2 days now since giving birth. It's been tough not being there for her, but I know she's a fighter. Thanks to technology, we still get to see each other through face time.

I hope blood counts tomorrow morning will show improvement.

Olivia's reaction after seeing her baby sister

2nd episode - fever/neutropenia during maintenance

Olivia is back at the hospital on a Sunday early morning. She had a 101 fever and was coughing. She was also noticeably tired and pale the day before. It turns out her blood counts dropped, with an ANC of 100 (Normal is 1500). Her red blood count was also low at 6.8 and therefore needed blood transfusion. It was a very similar episode of last month when she was last hospitalized.  It wasn't that easy to get the transfusion this time because she was running a fever the whole day. She couldn't get the blood transfusion if she has a fever. It hasn't been 24 hours yet but so far her blood culture is still negative from a bacterial infection. Finally at around 10 pm on sunday night, her temperature normalized and was able to get blood transfusion.

It was a hectic day for all of us. All this happened the day before I was scheduled to give birth. It really was like being thrown a curve ball with little time to react to the turn of events. Luckily with family close by, we had put a plan in place. I know we've had worse days than this. This I know we can handle. I trust God he is with us during this trial.

Olivia didn't want to let me leave last night but I told her I had to go to my hospital to get her baby sister out. She smiled and got excited. Looking forward to better days ahead when we are all home.

1 year in Maintenance

This month marks Olivia's 1st year in Maintenance. She has been doing well overall. I get questions once in a while asking if Olivia still has leukemia or is she completely healed. She is currently in remission and is in the final stages of her treatment. 6 more months to go and she's done with chemotherapy! The chemo during maintenance phase is like finishing antibiotics. You need to make sure you take it through the required duration to make sure the leukemia cells doesn't come back, and to make sure it continues to kill leukemia cells that might be hiding. When Olivia was considered in remission, there's this "minimal residual disease" that doctors measure. So it is still possible that there are some "monsters" still hiding and that's why we have to continue chemo for this long. Once she reaches 5 years in remission, we can finally say that she survived cancer!

I can't help but get sentimental at times especially when we found ourselves in the same restaurant (and the same table) where we were at exactly a year ago. Last year we celebrated Olivia's last chemo before maintenance phase. And look at her now. She has grown a lot, grown her hair and is the sweetest now more than ever! We celebrate her life every day!

1 year ago - last day of chemo before maintenance

Olivia 1 year later