2024 - Olivia is giving back

Time is flying by. I can't believe this year marks Olivia's 10th year in remission! She is doing well and healthy! We thank God everyday for the gift of life! 

Olivia will be doing something special this year as our way of giving back. We will be organizing a donation for the kids in the hospital where she received treatment. We are very excited for this opportunity and hope that this project will be a memorable one. 

Olivia has been seeing her oncology team every year for check ups. She will be monitored until she reaches the age of 30. Her visits at her cancer center for check up has always given us this feeling of mixed emotions. We're happy to see the doctors, nurses and staff we were always with at the time. We also feel for the families who are currently receiving treatments. It will be a great pleasure to bring some joy to the children at the hospital with the toy donations. At least for a moment it could bring light and happiness to the kids as it did back then for Olivia.

4 years in remission

It's been almost 2 years since my last post. After Olivia's last chemo and surgery, we slowly started getting back to our old normal. I thought this would be a nice post to share with other families who are almost at the end of their treatment.

Olivia went to kindergarten 9 months post treatment. We couldn't have asked for a better timing to be done with treatment. It was perfect. She had just enough time to get back into the groove of things before she started school. While it wasn't easy getting adjusted to a school setting, she tried her very best. 

Before she went to Kindergarten, she was able to spend a couple months back in her pre-school. At that time we noticed that she wasn't really participating in the writing exercises. Her teacher would show me her workbook was always blank. She wouldn't even try tracing letters. At first we thought maybe she needed a tutor to help her.  But after speaking to a friend and consulting with our oncologist, we were advised to see an occupational therapist. We got her evaluated and my friend was right. She definitely needed therapy. After years of not really using her hand muscles and just basic fine and gross motor skills, she needed help to learn all of that. I was worried in the beginning but to us, her health was more important then than having to pressure her to work on this while in active chemo treatment.

It's been a year now since she started therapy. We are thankful that we were able to figure out she needed it early on. While it's still a work in progress, we know she'll catch up in her own time. 

When Olivia was first diagnosed with Leukemia, I read a lot about the disease. Knowing more about it and what to expect definitely made it easier for us to get through the 3 years of treatment. I read a lot about post treatment and how your worries turn into something else. What happens beyond treatment? During treatment, while we felt like we were always on guard through all the infections, fevers, complications -you name it..we knew the protocol and we knew the doctors are there to help us get through. Post treatment, we started to worry about what to do when Olivia gets a fever. Do we still call the doctor on call right away? Can we now go to public places, exposing Olivia to a lot of people (and germs) and not worry about her getting sick? We had so many questions but we're glad our doctor guided us through what to expect next.

For the first year post treatment, Olivia had to come back for blood work once a month. The doctors still monitored her counts just to make sure the cancer cells are not coming back. The frequency of check up/blood work lessens every year. Now that we are in the 2nd year post treatment, she only gets blood work done once every 2 months . Next year it will be every 3 months, and so on.

So far, everything has been going well with Olivia. It took a while before she got her first fever. While she was in treatment, if she gets a fever, we automatically have to go to the ER and get admitted. Usually she stays in the hospital about a week average. We were told now that she is done with treatment, we would be going back to our regular pediatrician if she gets sick. They gave us the assurance though that if we think we really need to bring her back to the hospital, they will be there for us. First fever came, and we went to our pediatrician. It was weird to just have to take tylenol and get some rest in the comforts of our home. That's when we realized we are back to normal. A part of me felt that we are now on our own. (Of course we we're not because we were blessed with a good pediatrician and a reliable oncologist). It just felt weird for a moment. Slowly we eased our way into our normal routine. Going out on trips not worrying about getting sick. Having fun again as a family.

As for her blood counts, we used to always want to know right away the results of her counts. It took us a while to get used to not getting the results anymore. We had to just trust that if something was wrong, we would be getting a call from the doctors asap.

Next year will be a big one for Olivia. 5 years of being in remission also means we can finally say she survived cancer. She has always been a brave fighter, a SURVIVOR! She doesn't really remember a lot about what she went through but I believe all of what she had to go through made her become what she is today... Strong, brave, very positive attitude and never worries about the small things. We are so proud of her!

Post surgery update

Surgery today went well! The actual procedure actually only took 30 mins. But with prep and all, she was in the OR for about an hour. It was a really weird feeling walking through the same hallway 2 years ago when we were too overwhelmed to process everything but still had to go through it and we just did things as we were told. This time, 2 years older, wiser and more prepared, things went smoother than I originally expected. I laid Olivia down the operating table and I'm just so proud of how brave she was. She handled it like a champ! She looked nervous for sure, but no crying. She held on to my hand really tight and force-shut her eyes while we wait for the general anesthesia (through a mask) to kick in.

Recovery took about a couple hours. Everyone was congratulating us as it was basically like a graduation from all that Olivia has been through, as well as our family. This was the final step and we can finally say WE DID IT!!!

We went straight to her regular check up with her oncologist and everything is looking good. We won't find out her blood work results until tomorrow or Friday though. I had a long conversation with her doctor and I asked all the questions that most families probably ask post treatment, mainly about the possibility of relapse and how to treat fevers from now on. The chances of relapse for her type of leukemia is very rare (less than 5%). The doctor was pretty straightforward though explaining that it is still possible and that is why they still have to monitor her blood counts regularly, more frequently during the first few years post treatment. Now that the port is out, if she gets a fever now, we probably wouldn't need to rush her to the hospital like we used to. It's good to know though that even though we are done with treatment, we know that our oncologist will always be there to answer any questions or concerns that we may have.

Olivia's stitches should heal within a week. We just have to monitor it to make sure it doesn't get infected. Since she's still immuno-compromised, she still can get infections easily.

Surgery day

Today is a big day! Olivia will have her surgery to remove her port from her chest. It's a same day surgery procedure that should take a couple hours for the actual procedure and a couple hours for recovery. Leading up to this day, I have been slowly explaining to Olivia and her brother what to expect. For a 4 year old, she's so smart to ask the right questions. Ever since she had her port, I explained to both of them that she will have a special Ironman piece in her which will have super powers just like Ironman. But now that she's done with treatment, she no longer needs it. She is worried that there will be blood coming out of her body when the doctors take it out and asked if the they will put paper to stop the blood from coming out of her. I've been telling her not to worry because they will be putting her to sleep so she doesn't feel anything. She's used to getting sedated, but this is only her 2nd time getting general anesthesia.

I can't help but feel anxious about today. It must be because of the traumatic experience we had when she had her first surgery to put the port in her about 2 years ago. She was so young and small, wheeled in a crib and I had to carry her to the operating table.

After surgery today, she will have her regular check up and blood work with her oncologist.

More updates later.

First bloodwork post treatment

Olivia went for her first check up post treatment on Jan 20. This was 2 weeks after her last hospitalization. Her blood counts were just ok, with ANC at 700. Her doctor expects this to go up though. I think it's just like before, it took her a while to recover from her fever/neutropenia episode. She is doing well otherwise except for a fever the other day that only lasted overnight. I got worried that we had to take her to the hospital again knowing that her ANC is on the low side. We monitored her at home and the fever went away. Olivia was already getting anxious when we kept on taking her temperature. The thought of going back to the hospital makes her cry. 

Olivia's hair was thinning out again during her last hospitalization. She's looking forward to growing her hair long. She always talks about how she wants to have a long hair! It will be one day! 

Olivia is scheduled to come back to the hospital in 2 weeks for a surgery to remove the port from her chest. I've been slowly explaining to her what to expect which I think she appreciates. I can't believe how brave she is at her age!

Even though she is done with treatment, she is still immuno-compromised until 3-6 months post treatment. And that is why she still has to continue her Bactrim medicine, which protects her from pneumonia. We still want to be cautious that's why we are still holding off on sending her back to school. After 6 months post treatment, she will get tested to see what vaccines she needs to retake. 

For the first year post treatment, she will be going back to the hospital for blood counts once a month. The second year will be every 2 months. The third year will be every 6 months and from then on it will be a once a year visit to her oncologist for life. I still have a clear memory of a mother and daughter who went to the hospital one day for the daughter's check up. She looked like a teenager. She and her mom looked happy to see the doctors and nurses. It seemed they are there for their yearly visit. The mom saw me with my then bald daughter, smiled at me and said everything will be ok. I can never forget that day as it gave me hope in my lowest moments. It made me realize that one day, we'll get through this trial and will be smiling again just like them. And here we are =) What a blessing it is indeed!

Officially done with treatment

Olivia is officially done with treatment! Jan 9 was supposedly her last day of 6MP but when she went to the hospital for a follow up visit, the doctors said there was no need to do bloodwork. It was fine not to take the last dose of chemo. Even if she took blood test, I don't think her ANC would have been high enough anyway. Whenever she has an episode of fever & neutropenia, it takes about 2 weeks for her body to recover. Sometimes even longer.

Her final chemo was officially on December 30. I can't believe it's been 2 years and 2 months to be exact! We thank everyone who have been part of this journey. We went through a lot and we couldn't have done it without your prayers and support.

This week she us scheduled to come back to the hospital for a dose of pentamidine. It's the last time she will be accessed through her port. When I asked her what she will not miss the most, it's the part where she is accessed through the port. I told her that the doctors will be taking it out soon! Nothing is scheduled yet, but hopefully in the next couple weeks she will have her surgery to remove her port.

Home on day 5

Olivia is now home after 5 days in the Hospital,  and hopefully the last hospitalization! Her ANC went up from 198 on day 4 to 210. It's still low but it is trending up and the doctors were happy with that. The IV-IG infusion from last night was successful.  No bad reaction from it.

We will continue to monitor her at home for fever. If she gets any fever, we will have to take her back. Otherwise, she will have her next blood work done on Monday. That is her scheduled last day of treatment. If her counts are good, she might still be able to take her last dose.

Olivia is so happy to be home. She's been tired but she's getting a lot of rest.

Day 4 at the hospital

Olivia's ANC levels have shown a lot of improvements the past couple days. From 90 on day 2, became 144 the next day and today it is at 198! Her hemoglobin remained the same at 7.5. Her blood was also checked for immunoglobulin levels as well and it showed below 500 which is low. Because of this, the doctors ordered that she gets IV-IG (immunoglobulin through IV). I don't know much about this yet as this is the first time she is taking this. This will help her immune system fight viral infections. Just like blood transfusions, she is being monitored for any reaction. The transfusion lasts for 5 hours.

We are hoping that she gets to go home tomorrow!  More updates to come!

Day 2 at the hospital

Olivia's blood counts from this morning went down from yesterday. From ANC of 340 yesterday,  it is now only 90. Her hemoglobin also went down to 7.5. No need for blood transfusion though unless it goes down to a 6.

Blood cultures came back negative so she must be fighting a viral infection. She has been eating and sleeping well so hopefully that she will get better soon.

She has been fever free for more than 24 hours which is great. For now we just monitor her counts.

New Year's Eve at the hospital

With 1 week away from Olivia's last chemo (oral chemo), she develops a fever and gets to spend New Year's eve at the hospital.

The day started out so well for her. She even took a long nap in the afternoon so she has energy for the long night. She was having fun at our New Year's eve party until she didn't feel well. Turns out she had a fever and so we had to take her to the ER.  At 9pm, we hurried to the hospital to get her blood counts checked. We were hoping that we will be sent home because in her last episode of fever, her counts were normal and we were sent home after 1 dose of antibiotics. We wanted to do the countdown at home with the rest of the family. Unfortunately, it turned out her ANC went down to 340. It's crazy how her counts from 1 week ago was an ANC of 4,000+, and it plummeted to 340. It's been about 3 weeks since she is back to 100% dosage of her oral chemo. We already saw this pattern a few months ago that her counts drop once she is at 100% dosage. Prior to June when the somewhat regular hospitalization started, she was able to handle 125% dosage of chemo for months! The doctors advised to switch one of her meds (bactrim to pentamidine) thinking that it is what's causing her counts to drop on top of the chemo that naturally drops blood counts. I think it partially helps but I also think her body just really can't handle the full dose anymore.

Olivia was so upset to know that she had to be admitted again. She kept crying and wished she would go home instead. The good thing is that her HGB is at 8.9 so she didn't need to get any blood transfusion this time. But because she had a fever and ANC is low, she had to start antibiotics today and is on chemo hold again. I don't even know if she will still get any more chemo since her protocol has a hard stop on Jan 9. She was able to catch up on sleep today which made her feel a bit better. She is hoping to not have any fever tonight so she'll be able to go to the playroom tomorrow. She needs to be 24 hours fever free before she can go there.

It was not exactly how we planned to ring in the new year, but as long as Olivia is ok, I won't complain. I always tell myself "it could be worse". Everyday is a blessing!

She will get blood counts again at 4 am. More updates in the morning.

Last IV chemo

Yesterday was a special day!  Olivia had her last Vincristine (chemo through IV)! It's the best Christmas gift ever! All her blood counts are at its best too! Her ANC is 4,000+ and her HGB 10!

From now thru Jan. 9 she will continue to be on her oral chemo meds and then she will be completely done with treatment.

When we asked Olivia what her wish for Christmas is, she said she just wants her brother to be happy. Throughout the 2 year+ course of treatment, the 2 of them have been having a hard time dealing with the side effects of her meds (mostly the mood swings from her steroids - dexamethasone). Our 6 year old son has been looking forward for this day and if you ask him, Olivia being done with treatment is his only wish so that Olivia will always be happy. We feel so blessed with our kids!

Olivia has so many nicknames but we call her Liv/Livi most of the time. And now we realize how much her name fits her so well. She is so full of life. In her very young age, she is LIVing a life with so much love to give and thinks of others before herself. She is our miracle. Everyday is a blessing! 

Wishing everyone a Merry Christmas! Thank you for your continued support and prayers!

Last spinal tap; 2 years in remission

Olivia has been doing well for the past couple weeks. October through early November was really a rough month for us. 2 weeks ago, she developed a fever again and had to be brought to the ER (about 2 weeks after being discharged from her last stay). Luckily, her blood counts were good and she didn't have to be admitted. She was given antibiotics instead as a precaution. Her fever lasted only a couple days. It was a relief to know that her body was fighting an infection well. Her blood counts did not go down even with the infection. For the past few months, having a fever for her meant being admitted at the hospital for about a week and an automatic blood transfusion.

Today was a great day! Olivia's last spinal tap! I told her last night that it will be the last time she will have to be put to sleep for a procedure. She was so happy and excited! She even did the honor of pushing the syringe that put her to sleep.

I remember during Olivia's first 6 months of treatment I said to myself it was the worst 6 months of our lives. Looking back, everything we went through just made us stronger- as individuals and as a family. Though it was difficult to understand in the beginning, we soon realized that God had blessed us with a warrior. Despite what we went through, we knew we were given the gift of courage and faith that will remain in us forever. As we left her outpatient room, the nurses all gave her a big round of applause. Job well done, our sweet princess! You make us so proud! She would always tell us she never gives up. Even during her weakest moments, she showed so much courage. Sometimes it's hard to believe that she was only 2 1/2 years old when she was diagnosed. We walked away leaving so many memories, good and bad, in the pediatric sedation ward.

In a couple days, Olivia will be 2 years in remission. She still has 1 more round of Vincristine next month then it will just be oral chemo from then until January. After that, we'll be completely done with chemo! Thank you for your continued support and prayers! Before we know it, 3 more years will pass and we can finally say that she survived cancer.

Never Ever Give Up

Chemo day ; 2 years post diagnosis

Olivia had her Vincristine today and her blood counts today showed improved results. Her ANC started to go down a month ago at her last Vincristine chemo.  At that time, she was taking 100% dosage of her oral chemo. We now notice the pattern that when her dosage goes back to 100%, that's when her counts go down. When she has an episode of fever and neutropenia, her dosage is taken down by 50% of her usual dosage. However, she cannot start the oral chemo unless her ANC levels are at least 750. I have also noticed a pattern that it usually takes 2 weeks for Olivia to recover from neutropenia and get her counts back up. This month though, it took her 1 month to recover. She began this month with 844 ANC and it plummeted to 80 after a couple weeks. We had to pull her out of school again after 1 1/2 months of being back. Today, her ANC results were at 1700+! She is now back to taking  oral chemo (6MP and Methotrexate), but starting with 50% dosage again until her counts show consistent good results.

As Olivia was being examined by her oncologist, I mentioned to him that it was  exactly 2 years ago today when Olivia was diagnosed. It's hard not to recall all the things we have been through for 2 years. The doctor had a great point though. He wanted me to look the other direction - that in 3 month's time, Olivia will be done with treatment! It's definitely something we are all looking forward to!

Still Neutropenic

Olivia had her blood counts today and she is still neutropenic. We didn't get the exact ANC count but doctor was estimating it to be somewhere in the 100's. For the past 2 days, she has been having low grade fevers during early evening, but then goes away naturally. We took her to the ER again when her temperature reached 101. But once we got there, her temperature came down and normalized.  Since it was low grade fevers and knowing that she was just admitted recently, doctor adviced to just monitor at home. Her blood cultures were negative too which is good. She still has the cold though so that's probably why she's been getting the fever. Her hemoglobin dropped again to 8.6. When she was discharged last Sunday, it was at 10.5. Though it came down, it does not require blood transfusion. For now, we wait again until the blood counts next week.

I can't help but question why just now? She is almost done with treatment with less than 3 more months to go. For about 1 year she was so healthy and didn't require hospitalization or blood transfusion. The past 4 1/2 months feels like she is in active chemo again. Maybe her body is really taking the toll on all the chemo she's been taking for 2 years. At the end of the day, I am just thankful that she was so healthy for the past year. It could be worse. We still feel blessed. I know she is such a strong and brave girl. She is a fighter. I kindly ask for prayers that she recovers soon so she can be back on track with her protocol.

Home now

Olivia was sent home yesterday afternoon. Her ANC went from 200 the other day, to 230. It's still low, but at least it's trending up. She was so happy and excited to see her family!

No further tests were made from the bleeding that happened the other night. Her counts were good and the doctors can't find a reason why she would bleed that much.

Olivia will be on chemo hold until her counts go back up. She is scheduled to go back on friday for bloodcounts. The doctors changed one of her medication, bactrim, which is an oral prophylactic medication that protects her from getting pneumonia.  They changed it to a different medicine which is now an IV push every 3 weeks. They are thinking it's possible that bactrim is contributing to neutropenia and they would rather change it to something else so Olivia doesn't have to miss a lot of her chemo dose. From what I understand, the replacement medicine is slightly less effective than bactrim. But since we are at the final stretch, the doctors are probably weighing what's best for Olivia. With the 3 episodes of neutropenia in the past 4 1/2 months,  Olivia has missed a lot of doses of chemo.

Hospital day 4

Olivia has been fever free for a few days now. She is still coughing but other than that, she is active and playful. Her ANC continues to go up. It was 80 when she was admitted, went up to 136 and 200 yesterday.

Last night was one of the scariest night we've ever had. Olivia woke up at 4 am and asked to blow her nose. Before I even got the tissue,  she started crying. I turned around to see her drenched in blood. Her nose was bleeding profusely, her mouth overflowing with blood. It was pretty traumatic. She was not coughing nor blowing/picking her nose for it to cause the bleeding. The doctors and nurses came in to help right away. One of the resident doctors wanted to transfuse with platelets immediately but the oncologist wanted to have CBC done first. Interestingly, all blood counts came back good and were even better than the other day. They even did another test to see how long it woult take for her platelets to clot. I learned that even though platelets are normal, if it takes longer than normal for it to clot then there's a problem. That test came back good too. Platelets were normal and so they didn't have to transfuse. We were all just surprised why she would bleed so much if her platelets were good. It was a LOT of blood. The bleeding went on from both nose and mouth for about 20 mins non stop. I'm glad this happened here than at home or I wouldn't know what to do.

Yesterday we were told Olivia might be able to come home today if her ANC continues to go up. We are still waiting for today's results.

With what happened last night, I'm not sure if doctors would want to do tests and we would have to stay here longer. It is very dry here in the hospital which I think is the culprit for the nose bleed. But what still baffles me is why she would bleed so much.

Will post updates later.

Hospital again

Olivia was admitted again yesterday after spiking a fever of 101.9. I kind of saw it coming because she would ask for a lot of water at night and that's how she was the last time she needed to be hospitalized. She was also running low grade fevers the past couple days but because it was lower than 100.3, we just needed to monitor her from home.

Blood counts from yesterday was low and she needed blood transfusion. Her hemoglobin was 5.9 (Her normal is 10 to 11). The transfusion happened last night and today we've seen improvement in her hemoglobin. This morning her HGB is 8.6. Her ANC didn't really show improvement from yesterday. It's the lowest it has been at 80 ANC post diagnosis. The good thing is that she is 24 hours fever free. As usual, her ANC needs to go up before she can get home.

She is keeping herself busy with her new Cinderella outfit, thanks to Spirit Halloween for the event they had at the hospital! She is asking when she will come home and I always just explain to her what's going on like I'm talking to an adult. She gets it and I'm proud of her.

Low ANC

Olivia had her monthly Vincristine today. As she was getting examined by the doctor, we noticed she had some sores in her mouth. She has no fever though and she seems active and well the past few days. I also showed the doctor what I initially thought were bruising on her leg after getting mosquito bites. She had a few spots on her leg (4 big ones and a few small ones). It turns out it was discoloration in her skin which is a usual side effect from chemo. It takes longer time for chemo patients to heal from cuts, mosquito bites and could lead to skin discoloration. Nothing to worry about that. She is not bothered by it, nor the sores in her mouth.

We will need to monitor her closely however, because her ANC is only 884 which is low. We will have to keep her off school for at least a week. She was also scheduled for her dentist check up and flu shot this coming week, but because her counts are low, we will have to hold off for right now. I just realized she cannot get Flu shot anyway while on dexamethasone,  which she starts again today for the next 5 days. Her hemoglobin also dropped to 8.4 from about 11 if I remember correctly from last month. It is not that low that would require blood transfusion though.

She is scheduled to go back for blood counts 2 weeks from now. Praying for better results then.

Maintenance Cycle 6

Olivia had her 2nd to the last spinal tap procedure today as we entered Maintenance Cycle 6! It was exciting to discuss with the medical staff the remainder of the protocol schedule as we are almost at the end! Aside from her monthly vincristine and daily oral chemo until January,  she has 1 last spinal tap (1 last cycle) left on her protocol!  We are almost there!!!

Her blood counts have been good (ANC of 2,088!!) and so she is back to 100%-125% dosage of her chemo. Praying that there will be no more roadblocks as we approach the end of her treatment.

Other than that, Olivia has been doing well and very happy that she is back in school now. She missed all her friends and is very excited to make new friends everyday!

Chemo resumes

After 3 weeks on chemo break,  Olivia's blood counts finally normalized and is now back on her chemo regimen. Her ANC is now 1520! Yay!  But because she has had 2 episodes of fever& neutropenia,  the doctors had to take down the chemo dosage to about 60% of what she normally takes. Her blood counts will also be closely monitored. Until she goes back to 100% of the dosage,  she will have to get regular check ups and blood work every 2 weeks now instead of once a month. When her blood counts show consistent good results,  only then will she be back on her normal dosage.

I'm hoping she adjusts well with chemo after taking a short hiatus.