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.