Another waiting game

We just finished having blood work done for Olivia today. She is almost done with her 2nd phase of chemo treatment. Before she starts with her 3rd phase of treatment, she needs to have blood counts done. Her ANC and platelets need to be at a certain number before she can start the next chemotherapy.

I feel so anxious every time we are waiting for test results to come. I know there's going to be a lot of this in the next 2 years. Just have to get used to it and remain focused. The goal is to make Olivia as comfortable as possible and provide a sense of normalcy around the kids. Only positive thoughts! We can do this!

Merry Christmas!

We wish everyone had a Merry Christmas! We got home from the hospital on Christmas eve night and had a nice family dinner. Thank goodness for Skype, we were able to call and join in the fun with the rest of our family close by since we couldn't really bring Olivia out.

It was a nice surprise to come home to a box full of goodies for Olivia from her swimming school family! Thank you so much for your generosity! It also came with a nice Christmas ornament, which is now hanging perfectly on our tree!

The kids were so happy waking up on Christmas morning. It's just what I pictured and have been praying for the past few weeks - for our family to be complete at home for Christmas.

Olivia was so happy to be home and had so much energy this weekend! She's so excited to open presents. I can't thank enough everyone who has showered her with all these presents. It's the best feeling in the world to see her so happy. She has been walking by herself now too! It's still not the normal walk, but I think she's just not used to carrying the extra weight.

Thank you all for your continued support and prayers!

Home for Christmas

God is good! It's 6pm and we are on our way home! Should be home in time for a nice Christmas Eve dinner celebration. Best Christmas gift!!! Thank you Lord and for all those who don't stop praying with us!

Still waiting

It's 4pm on Christmas Eve and we're still waiting for test results to see if we can go home today. Santa came earlier this morning and visited Olivia right before her spinal tap and chemo. She was so happy to get so many presents and wanted to open them already!

It's a busy day here at the hospital. Lots of volunteers going around the floor visiting patients and giving gifts. The floor is full of patients too! Saw a kid with a bunch of visitors and some kids playing around in the hallway. The happy faces and laughter at least makes this situation more bearable. Olivia has been keeping herself busy with her new toys.

She was also pretending to take her temperature using the pencils as her thermometer! Funny kid!

And now, we just wait...

Olivia's phone calls

Olivia decided to go to the playroom today! She saw a play phone and decided to make some important phone calls before Christmas! Might be hard to understand the videos, but she's basically telling her grandparents to come visit her at home!

Phone call for Lolo:

Phone call for Lola:

Phone call for Grandma:

Quick update

Good news! The bacteria that they found the other day was only a contaminant and not something that would cause an infection! All of her antibiotics are being stopped today and will only be getting fluids now. She is scheduled for her spinal tap and chemo tomorrow, which was the one she missed last week. We would need to wait for the spinal tap results before they allow us to go home tomorrow. We have always believed in miracles, and we are hoping we get a Christmas miracle. More updates tomorrow.

Anxiously waiting

After a week's stay here at the hospital, Olivia has gotten comfortable with everyone again and decided to even spend time in the playroom. She has been very chatty with her doctors and with Lolo and Lola who came to visit today! Thank you for more loads of sinigang!

She did well over the weekend and has finished her 7-day antibiotics today. Bad news is that a different bacteria was found yesterday. Because of this, a new antibiotics was given to her yesterday to get a head start in killing the bacteria. We have been anxiously waiting for test results to come back which will identify the type of bacteria. Depending on the results, the plan of action might change and we'll find out more on how long she will need to be on antibiotics again. This could mean longer stay in the hospital. But because Olivia's blood counts have been consistently good, and she has been fever free for a while now, the doctors are giving a heads up about the option for us to administer her IV antibiotics at home. Things can still change as soon as we find out about her test results, hopefully tomorrow afternoon. If ever we do need to have her antibiotics medication at home, we will be taught how to access her portacath and inject medication. I'm kind of nervous about doing it myself, but excited at the same time with the thought of finally going home.

It might be unlikely to come home before Christmas, but I don't want to give up on that yet. The thought of spending Christmas here makes me really sad. Who would want to spend Christmas at the hospital anyway? If ever that's the case, we'll try to make the most out of it - for both Olivia here at the hospital and for her brother who will be at home. I just don't know what that means or how we'll be able to do that. As I reminisce on past Christmas celebrations, I realize how lucky and blessed we were to be spending Christmas at home with family. Watching the kids open presents is so delightful, and watching my brothers play prank on presents is truly entertaining. But really, I just want us all to be together and that Olivia gets her Christmas wish - playtime with cousins. Today she was skyping with her cousins and she has been asking to go to cousin's house. She has also requested to come home. Soon Olivia, soon...

Here she is at the playroom today. She is such a trooper. Staying positive is the way to go.

One step at a time

Olivia's mood was on and off today. She gets irritated with the little things. She has been eating better than the past few days though, thanks to Lola's spicy sinigang! She got upset for no reason earlier today, and as soon as she saw the sinigang, specifically the radish, she got so excited and happy! I've never seen anyone get excited about radish like that!

She has been sleeping well too and I'm glad she's getting enough rest. I think she has pretty much lost the weight she has gained when she was under steroids. She has lost a lot of hair too these past few days. She has had different looks since she started getting sick. Here are some throwback pics which were taken about 1 month apart. The first picture was taken the day before it all started. It was the day before she started acting different in school, and the day before the first fever started:

Last night she was watching wonder pets and was singing along a song with the lyrics "one step at a time". We are again reminded that even at tough times, we just have to take it one step at a time. Watch her video below.

It's one of those days

That moment when you are so tired from crying and you fall asleep sobbing

It's been a rough morning with Olivia today. She has been fever free for more than 24 hours now but is still being monitored carefully. She was very irritated and uncomfortable this morning that it took a couple of medical staff to help me calm her down. I'm glad she is relaxed now and has actually asked for food!

Good news is that preliminary spinal tap results showed no signs of infection. Her white blood count has normalized to a number that's expected from a chemo patient. However, because she showed elevated white blood cells in her spinal fluid and blood earlier this week, plus the fever, the doctors are being extra cautious of any possible infection. It is possible that she is showing no signs of infection now because the antibiotics is working. That being said, we are told that we need to stay here until she finishes her 7-day antibiotics treatment. We are also still waiting for more test results to come back which may take up to a week. Her scheduled chemo tomorrow will also now be put on hold until she is done with her antibiotics.

For now, we are just trying to make her as comfortable as possible. We are hoping and praying that we will be home for Christmas next week!

More gifts from Santa!

Santa came to visit again today! Looks like he grew his beard from the last time we saw him on Friday. (check my "Hi Santa!" post from 12/12..lol)

The spinal tap procedure went well today. I have reported yesterday that she was fever free for 12 hours. I spoke too soon I guess because she had fever again last night. We are still waiting for results of the tests. They took 4 times more spinal fluid than they have been doing previously for additional tests that they need to run. Preliminary results should be available sometime tonight, but majority of the tests will take a couple of days to come back.

Olivia has not been eating well, only munching on pretzels once in a while. She has had a few spoons of soup and few bites of banana plus a few ounces of pediasure. She used to at least love to drink pediasure, but now she cannot even finish a bottle. She likes the spicy soup I gave her last night. I'm thinking this might be the time to whip out the hot sauce. I'm nervous about giving it to her though.

Olivia was in good spirits today overall which we are thankful for. Every day is a blessing!

Mommy and Olivia right before getting sedated for Spinal tap procedure

Waiting for answers

Olivia has been fever free for about 12 hours now! However, her blood counts when we got in yesterday, as well as her spinal tap results from Friday last week showed elevated white blood cells. It could be caused by a few things and we are now in a process of elimination to figure out the reason for the numbers to go up. One thing for sure is that the increased white blood cells are not caused by new leukemia cells in her body. That at least is a relief.

More blood tests today and a spinal tap is scheduled tomorrow morning to try and give us answers. Please continue to pray with us that everything will be alright.

Meanwhile, Olivia has been keeping herself busy today doing some painting! I'm so glad to see her relaxed and calm, a complete 360° from last night at the ER. It was a rough night for all of us.

Back again :(

We're here at the hospital again on a Tuesday early morning because Olivia has a fever. This time we had to go to the ER. Because of Olivia's condition, she is not allowed to stay in the waiting room with other people. We were taken to a room right away and we're now waiting for her to get hooked up on IV.

I have always loved weekends, but I appreciate it waaaay more now than ever! We were basically just given the weekend break to be at home with family. I don't know how long we'll be here again. As we were driving earlier, seeing all the Christmas lights made me wish that we'll be able to spend Christmas at home.

As we patiently wait here, hubby and I are playing a guessing game what our room number would be this time. Gotta have some humor sometimes.

Home on Day 5

We are finally home! Olivia has been fever free for more than 24 hours and all her blood cultures came back negative! After her spinal tap we were finally discharged!

Olivia was so excited to go home! She can't wait for Daddy to come and pick us up that she'd rather drive home herself!

Pit stop to check vitals!

She loves playing peek-a-boo!

And now we're ready to go home! I'm glad we get to spend the weekend at home with family. 'Till next week, hospital!

Hi Santa!

Perfect timing! On our way to sedation this morning, we saw Santa and his elves come in with toys! Olivia was scared at first but smiled after a few minutes.

So nice of Santa to visit the kids at the hospital. I'm sure he will brighten up everyone's day today!

Waiting it out

Second blood culture came back negative as well. She does have a viral infection. As mentioned in my previous post, as long as she has a fever, they will check regularly for any bacterial infection. For now, it's just a waiting game for the virus to run through its course. For someone who is not immunocompromised, viral infection can last up to 10 days. For an immunocompromised like Olivia, it could be longer. We keep praying she'll fight that infection really fast so we can finally go home.

Her spinal tap procedure is a go for tomorrow. All her chemo continues even though she has a viral infection. She has such a strong body. Keep fighting Olivia!

I heard Santa might come visit tomorrow! Hopefully we get to see him! Olivia's been keeping herself busy with a bunch of donated toys from a generous organization. Once a month the children's hospital chooses an organization that can hold a party here and give toys to the kids. Too bad Olivia had a fever so we were not able to attend the party. They came around with a cart full of toys though so that kids who cannot attend can still get presents. There is also an art therapy in the hospital which we were so excited about! I showed Olivia's "perfect love" painting to her childlife specialist and had recommended us the art therapy. We'll be meeting with the person in charge hopefully today to schedule some sessions for Olivia.

Day 4 of Fever

Olivia's fever still comes and goes. When it spikes up though, it is not as high as it was before. We are still waiting for the results of her 2nd blood culture. Also, since it's been 24 hours since the last blood culture and she still has fevers, they ran a 3rd test on her. Blood culture results take about 2 days to complete  They keep track everyday to make sure there is no bacteria brewing in her. She is also on a different antibiotic now that started yesterday. Even though her infection is most likely viral, she will continue with her antibiotics. This is a precaution because the port on her chest is being accessed, which is prone to infection.

This morning she ate about 6 spoons of noodles I made from home yesterday. This is the most she has eaten since we got here! I'm glad!

     

She was also being playful with the nurses this morning. She loves playing hide-and-seek with them!

     

In order for her to get home, she needs to be fever free for 24 hours and the blood culture needs to be negative. Her blood counts have consistently been good, which we are thankful for.

Shake it off Olivia!

Olivia is doing OK for right now on our 2nd night at the hospital. She was playful this morning and very talkative. She still has low grade fever in the morning and spikes up at night. It was as high as 103.9 last night. Her daily oral chemo was put on hold yesterday just to make sure it will not interfere with her blood counts. Her current chemo tends to lower her counts as a side effect.

There was nothing alarming with her blood counts and her initial blood culture came in negative. She will proceed with her chemo today since everything seems normal with her blood counts. Since she still has fever, they will do a repeat blood culture to make sure nothing is brewing in her. It's likely a viral infection she is trying to fight.

I'm also concerned that she has not been eating well today. I guess when you don't feel well, you don't have an appetite to eat at all. She had a few bites of french toast, some noodles, plus a bottle of pediasure for the day. I tried to give her jello and that almost made her throw up. She wouldn't even try cheese bread (cheese has been her favorite this past month!). My poor baby girl. She would allow me to spoon feed her but most of the time she would just keep the food in her mouth. I let her spit it out and give her another spoon, hoping at least she's sucking some of the nutrients.

Before going to sleep tonight, she heard me listening to Taylor Swift's "Shake It Off" song. She shouted, "that's my song!!!", and danced to the tune. That's it Olivia, shake that infection off my baby girl!!!

Back at our hotel (Children's hospital)

Olivia had a 101.4 fever earlier today and so I had to rush her to the hospital. She was examined by her doctor and everything seems fine except for her fever. Anytime she gets a fever, she will automatically be admitted and be given IV antibiotics. I am so happy we have a great medical team. We were attended to right away and she got hooked up on her line so fast.

They are also running blood tests to see if there is any bacteria. Bacteria or no bacteria, antibiotics is a must. They also want to see her blood counts. Usually if it is just the fever, we could be discharged in 48-72 hours as soon as the fever goes away. But if her blood counts are low, the doctors will approach it a different way. Not sure yet what that means. All I know is we'll be here longer if that's the case. I was reminded again to take one day at a time. As of right now, we are still waiting for the blood test results.

One thing I learned today is to always be prepared with a grab bag. Just like when I was pregnant, we had the emergency bag. You just never know when Olivia needs to be rushed to the hospital.

Second phase of treatment (Consolidation)

We were at the hospital 2 days in a row this past week. On Thursday, we discussed Olivia's test results with her doctor and had her regular blood test.We needed her blood counts to be at a certain level in order to proceed to the next phase, which is called consolidation. And so Friday, we started this phase with a new chemotherapy treatment. This phase will last for 1 month. The goal of this phase is to focus on her central nervous system. This means she will be sedated once a week and be given chemo through her spine, plus a daily oral chemo medicine.

Results from her 1st month of treatment was favorable. Because of her age and her white blood count being less than 50,000 during diagnosis, she is considered stander risk (vs. High risk). Within standard risk, there are sub risk categories which is determined during her 1st month of treatment (Induction). Based on the results, she is borderline average risk (there is low risk, average risk and high risk). She would have been categorized as low risk if her 8th day results showed that her cancer cells were less than 0.01%. Hers was 0.03%.

The risk groups basically address how intense her chemo treatments will be. The goal of the first month is to know the strength of the enemy and eliminate majority of the cancer cells. Once we know the enemy's strength, the doctors will know how to attack. Kids with highly favorable results don't need to be given intense and toxic treatments if their body doesn't need it. Olivia falls within a big percentage of kids falling under the standard-average risk.

Here's Olivia at the hospital on the way to sedation, still in good spirits!

She did great the whole time! Here's the 3-man team for the job getting ready - the comforter (Mommy), the fighter (Olivia), and the Ipad holder (Daddy). Yes, she requested Daddy to hold it for her. Would not want to argue with that. =)

It's working!

I just got the greatest news! Olivia's doctor called about the results of her Bone Marrow, Spinal and Chromosome Tests. All came back with good results! Her cancer cells came in less than 0.01%, which is what we were hoping for. Her 1 month of chemotherapy worked!!! We are going to the hospital tomorrow for her regular blood test and to discuss with the doctors the next stage of her treatment. More updates to come tomorrow!

Last night Olivia was in a really good mood and decided to wear her Princess Sofia dress!

What a joy to see her so happy!

Her laugh is music to my ears!

All I want for Christmas is...

I'm happy to report that Olivia started to play again. It's been a while since we have seen her smiling, happy and playful! Her cousin Kaela visited her over the weekend and her smile and laughter was just priceless!

She is also working on coloring her cape this week. It will be a good project for the next few weeks! Projects that don't require a lot of mobility works for her since she's still having a hard time walking. Once in a while she's willing to try to walk.

I have been asking her what she wants for Christmas. She sees a lot of Christmas presents under our tree and she doesn't even ask if there are presents there for her. This girl is so simple. All she wants for Christmas is to be able to play with her cousins. Sometimes I can't help but cry seeing her not able to do the normal things kids do. She is a kid - she's supposed to have fun, attend swimming and ballet lessons, play with friends and go out to see nice places. But I know God has a plan for her and for us, and He is preparing us for it. We have faith!

We were not able to spend Thanksgiving with family because some of her cousins were just recovering from colds. Hopefully this Christmas everyone is well so we can all be together.