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.

1st hospitalization since last year

Olivia is admitted to the hospital today after about a year. She developed a fever a few days after her mouth sores appeared. She has been running low grade fever for 4 days and started coughing now as well. We have been in contact with her doctor since the weekend and we were just monitoring her from home until today when the doctor adviced to come to the hospital and get checked. Doctor was worried as she was showing signs of dehydration already.

The doctor saw her sores are getting better and had started her IV fluids for hydration.  At first we, the doctor, nurse and I thought it will just be a quick visit for hydration and we'll be able to go home after an hour since there were no signs that she needs to be admitted.  We still had to wait for blood test results though.

Good thing Olivia got tired and sleepy so she just slept for an hour while waiting for fluids to be done. She woke up for a second just to say "mama, I love you!". This girl knows how to make mama feel better. I was so anxious waiting for blood tests to come back. For some reason I had a feeling something is not right..even when the doctor was initially thinking of sending her home after fluids.

Blood tests came back and doctor was surprised with the results as well. Her hemoglobin was 5.6 (she has been at 10+ for about a year now) and will be needing blood transfusion tonight. White blood count was 0.7 (she has been somewhere around 3+ for about a year). We didn't get her ANC count yet, but with a WBC of 0.7, that definitely means her ANC is low and is neutropenic. All chemo will be immediately stopped for now due to low counts.

Traumatizing events came back to my mind. It brought me back to diagnosis day because her counts haven't been this low since diagnosis. So I asked right away if there is a concern that she will relapse (cancer coming back). I was told that infection in her body can cause her counts to go down. And that since she is standard risk, I shouldn't think of relapse right away. I just find it so strange because her counts have never been this low since diagnosis. I'm praying that everything will be ok and that this too shall pass. It's true what they say though about mother's instincts. Something about the consistent low grade fever tells me there was something wrong. But we're here now and Olivia is trying to get better.

Other than blood transfusion tonight, we are also waiting for blood culture results to see if she has any bacterial infection that is causing the fever. As for Olivia's condition, she is usually tired and sleepy. It's also so weird to see a lot of hair falling again too. She hasn't been eating well but I've been telling her about being a flower girl for the wedding this weekend and that motivates her. I really do hope she can make it to her uncle's wedding as this is the first time she'll be a flower girl. She has been looking forward to it for the longest time!