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

Maintenance cycle 5

Olivia had her blood work done last Thursday and we're happy to report that her counts have improved a lot from last week. Her ANC is now back to 1100. Still below normal, but a big jump from falling below 200 last week!

She had her scheduled spinal tap yesterday,  Friday and all her chemo regimen is now back to normal. It was a good week off chemo, for both my husband who administers the meds and specially for Olivia. No fasting for a week (she fasts daily for her meds) made it easy for all of us.

As I was talking to her doctor after the spinal tap procedure, she was surprised to know that last week was just Olivia's first episode of fever & neutropenia since maintenance started and we are already in cycle 5. I guess that's a good thing. It's sad to know that it happens more often to  other kids. I think about all the other kids always and I know each and everyone of them are a fighter in their own ways. We'll get through this!!!

Olivia is getting into the habit of helping the doctors with the injections and this time, she helped out injecting her anesthesia. She had no idea what she was taking in although she was saying she is going to outerspace! She was really hungry before the procedure but couldn't eat anything until after spinal tap was done. When she woke up, she was happy to have her favorite froot loops!

Home at last

Olivia was able to get discharged today at around 8pm. Her blood counts are still low,  no improvement from yesterday. But because she had no more fever,  the doctors let her go home so she can attend her uncle's wedding. It made her so happy! Not once did she complain when I told her we have to stay at the hospital for a few days. She understands. When she was told she can go home,  she cried happy tears. As soon as she got home she asked to practice her flower girl walk!

We just need to be very careful because she's prone to infections due to low ANC. She'll be wearing her mask and will be taking a lot of rest during the wedding. The doctor said if she develops a fever,  we will need to bring her back to the hospital right away. Her infection was most likely viral because the blood culture was negative from bacterial infection. 

We also asked the doctor about Olivia's hair loss because she lost so much hair the past few days. She said even at maintenance phase,  she will still lose hair but she won't get bald.

All chemo is still on hold. Olivia is scheduled to come back on friday next week for blood counts to see if she is ready for chemo again.

After bedtime prayer tonight,  Olivia said she was so happy to be home. God is good all the time!

Day 3 at the Hospital

Today is Olivia's 3rd day at the hospital. Yesterday she was so much better, more color (thanks to the transfusion!), and had a lot more appetite. She had no fever overnight too. Her hemoglobin count is now 9 and white blood count is 1. The problem still is her ANC. It is only 100 (normal is 1500) and is severely neutropenic. This is most likely caused by an infection. It takes a couple days for blood culture results to come back to find out if it is bacterial infection. She started antibiotics as soon as she got admitted though in case it is really a bacteria that is causing the fever.

The doctor will let me know today if he can send Olivia home today and if she could attend the wedding tomorrow. There's nothing they can do to increase her ANC. Her body just needs to recover on its own and it could take until next week before her counts go up.

More updates later today once I speak to the doctor again.