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!

Dealing with mouth sores

Olivia developed some mouth sores recently which is a common side effect from her chemo meds. She has some on her lips and a lot on her tongue. The ones on her lips bled a bit yesterday and now the sores on her tongue is causing her pain and discomfort when eating.Trying to feed her soft food while her mouth sores are still not healed. She loves eating pretzels though, but it will hurt her more if she eats hard food. Hopefully it heals soon.

Birthday chemo

Yesterday was chemo day and Olivia was surprised with toys! Just like last year, she was able to spend her birthday with her nurse friends. As always,  she was so brave the whole time getting chemo. No crying at all!

Her blood counts were good,  although her ANC is slightly below normal.  (1100 vs 1500 normal count). I was told not to worry too much about it and to let her enjoy her birthday weekend.

Olivia is almost a year and a half in remission. In about 9 more months, she is done with treatment!  I can't believe how much time has passed by already. Last year we had a small celebration for her birthday since she was still undergoing intense chemo treatments. This year, we planned for a big party for her and she is so excited! She deserves nothing but the best!

Chemo day

Yesterday was chemo day. It was a quick and easy visit to the hospital.  So proud of our brave girl!

She even has her own job at the end!

https://youtu.be/WUkSOd7wkgc

After chemo glow

Every time Olivia gets chemo,  I notice she has this certain look- she looks very tired,  droopy and dark under eye circles, and physically tired as well. I remember back in the intense phase of her treatment (delayed intensification), it was hard to recognize her as she would look really different after chemo. You know her body is taking a toll from all the toxic medication. You can't help but cry because you feel helpless. These are things of the past that makes us appreciate and feel blessed to be where we are now.

A few days after her monthly chemo,  and with the help of the steroids to increase her appetite, you will notice a certain glow, I call the after chemo glow. I took her out to breakfast and she told me it's the best day ever! I'm so happy to see her with so much joy and how she appreciates the most simple things.

Olivia 2 days after Chemo (Maintenance cycle 4)

Olivia 1 week after chemo

Maintenance cycle 4

Last Friday Olivia began cycle 4 of maintenance. She had chemo and spinal tap. And as always, she was so brave all throughout. She was tired before we got to the hospital and so she was sleeping for the most part while waiting for her procedure to be done. I got a bit worried because she had increased heart rate while the spinal tap was happening. She was breathing heavily even with oxygen support (she was sedated the whole time). Olivia looked flushed so her temperature was checked which could be a reason for the increased heart rate. Her temperature was good though and the nurse kept on monitoring her until she woke up.

That afternoon, the doctor gave us good news that her blood tests show that her liver function count has improved! A few minutes later the doctor emailed and asked for a number she could reach us at. Then we got nervous. We never got that kind of email before. She did say it was nothing urgent to worry about. But of course we still couldn't stop worrying. We found out that her glucose levels were low (glucose count 27). Doctor said there's different reasons why her glucose will be low. But as long as Olivia looked and acted fine, there's nothing to worry about. Chances are she was on fasting for a longer period of time than usual that's why her glucose was low. She needs to fast everytime she has a spinal tap procedure. There was a delay at the hospital that's why her procedure was done later than usual. I read about low glucose online and Olivia showed no symptoms that we should worry about.

A lot of worrying today but I'm glad everything is fine. Olivia's back on steroids and her appetite is fast increasing again! Only kids on steroids get a pass to eat chocolates for breakfast!

Update on liver function

We went for Olivia's scheduled check up on Thursday. I expected to have blood work to be done,  but after being examined by the doctor,  he said there's no need to. They would rather do it in 2 weeks when she is scheduled to come back for her spinal tap procedure. One less traumatizing needle poking for Olivia.

She was back to her cheerful self, no enlargement in the belly area,  no complaints of pain which made the doctor decide to not check blood count this week. He did say that her liver enzymes has been fluctuating. Many years ago,  this level of increase would be a reason to stop chemo for a certain time but recent studies show that they don't need to. I asked if there is a long term effect to her liver and the answer is no. He said the liver is one of the greatest organs in our body because it can recover on its own. I still pray though that her liver enzymes don't go higher than it did.