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!