Chemo day and trick-or-treating

We started the Halloween eve with trick or treating around the hospital. There were a lot of kids who joined the event,  in-patient,  out-patient and other patients just visiting for the Halloween.  Good thing Olivia had scheduled chemo so it was hitting two birds with one stone!  All the kids had fun!  We went around the entire hospital and got a lot of goodies! When we got to the pediatric ward where Olivia stays when admitted, It made me sad seeing all the patients that had to be there. One of them was Olivia's friend who usually would be in the hospital too everytime Olivia had to be admitted. It reminded me of the days when we spent most of our time in the hospital and how I wished we were home for events like this. On the other hand,  it made me smile that all the hospital staff from doctors, to nurses,  child life specialists and volunteers did their best to make the kids happy on halloween!

                    

                    

When it was chemo time,  Olivia held on to her Reese's chocolate with her candy bag on her side while getting her port accessed. She cried a little but was happy again as soon as she ate her Reese's!

After the hospital,  we visited her old school to see all her friends in costume!  It made her happy to see them and her teachers again!

Today on halloween,  she gets to pick a different outfit for more trick-or-treating fun! Happy Halloween!

1 year down; 1 1/2 years of treatment to go!

Today marks the first year since Olivia's diagnosis. I still can't believe it's been a year! Leading up to this day, my husband and I had nightmares about Olivia's condition and we think that it's because of all the anxiety remembering what we went through last year at this time. It traumatized us, but looking back we know that God had been preparing all of us for this for a long time in so many ways.

Olivia is doing great and she is scheduled for her chemo this Friday. There's trick or treating at the hospital that she might join when she's done with chemo. Last year she missed all that because of her surgery and she basically just slept all day after surgery on halloween. She didn't even get to wear her halloween costume at the hospital.  This year she will have the best time ever!

It was also a nice surprise to get the letter from Make A Wish foundation this week letting Olivia know that her wish is granted! We are so looking forward for this trip. Wishes really do come true!

Fever Update

Happy to report that Olivia is feeling better! Though she still has a slight cold, her fever only lasted for a night. I'm so happy that her body is healthy enough to fight the viral infection!

Today she had the chance to see her regular pediatrician again after a year for her flu shot. She will continue to see her oncologist for other matters as long as she is under chemo treatment. I was actually surprised that she is able to receive flu shot even under chemo. Her oncologist explained that it is the only vaccine she is allowed to take for now. They advised that she will need to take the flu shot 2 weeks before she will start another cycle of dexamethasone.When she's done with treatment (approx. 1 year and 2 more months), she will be evaluated to find out what vaccines she needs to take / re-take.

As we were walking towards the doctor's office, I got so anxious with the thought of getting her exposed to sick kids in the doctor's office. Good thing there was probably only 1 or 2 other kids in the waiting room. We had the "well kids" room all to ourselves =). One happy germaphobe mama!

First fever since April'15

It's been 5 months since Olivia's last fever. Today Olivia developed a fever of 101.1. We notified her doctor right away. If in the past we have to rush her to the hospital, this time because she is in maintenance, and her most recent blood counts were good, we were allowed to give her Tylenol and monitor her symptoms at home. I have a strong feeling this is just a viral infection.

I'm praying the fever goes away quickly and no bacterial infection develops. Other than that, we are looking forward for Halloween! Last year Olivia missed out on a lot of fun because she was already feeling sick then and we just didn't have a clue on what's going on with her. She also had surgery during Halloween last year for her port.

Maintenance cycle 2 begins

Olivia's procedure from Friday last week wasn't so bad at all. She didn't even cry when her port was accessed! Still, she was anxious and complaining she was really hungry. She couldn't eat until after her spinal tap was done. Eventually she got tired and fell asleep even before she was given anesthesia. That's why the anesthesiologist didn't give her too much of the "white medicine". She was sleeping more than an hour after the procedure and if the nurse had not tried to wake her up, she probably would be sleeping longer! She woke up in a good mood too. The anesthesia must have worn off completely already at that time. 

Here she is enjoying her pretzels after her procedure.

This time last year, she had the first symptoms of leukemia. It was when her fever started. 2 days before the fever, she wasn't herself at school. The teacher told us that she would wake up screaming and crying. 

This video was taken the night before the fever started.

https://youtu.be/jPywGZeem7g

A couple days later, she began to look pale.

I can't believe it's been that long already! Though it has been tough, it has also been a very humbling experience. Everyday we consider ourselves, especially Olivia, blessed. There is so much to be thankful for. A lot of other people has it worse than this, and they are in our prayers everyday. We always try to look at the good things in every situation. That's what got us here. 

1st cycle of maintenance complete

This week marks the end of Olivia's first cycle of maintenance.  1 cycle is 3 months and there are 12 cycles overall in maintenance phase. 33 months remaining! Sounds like a long time, but I know it will go by fast.

This friday will be the day 1 of cycle 2. Every cycle will begin with a spinal tap, intrathecal chemo (through her spine) and IV chemo. She will be sedated for this procedure.  I remember when she used to do spinal taps weekly like it was just part of our normal routine. Now I get a bit nervous about it but will stay positive for Olivia. The secret to a lot of these situations is to make her feel that it's not a big deal and definitely to show bravery so she will be brave too.

It is still important to have regular spinal taps during maintenance to make sure they don't see leukemia cells in her spinal fluid. At diagnosis, no leukemia cells were found in Olivia's spinal fluid, but there's a possibility that it can show up if she relapses. And that's why she gets regular chemo in her spine even though there's no 'monster' in there. We learned from her doctor that many years ago when survival rate was not as good as where we are now, that they didn't follow the same protocol as far as administering chemo through the spine for this long period of time. That's why a lot of patients relapsed. The 'monster' was actually hiding.

Olivia usually gets groggy and tired for the rest of the day after a spinal tap procedure. Hoping and praying this will not be that bad.

Here she is having fun with her long hair. I bought this wig for her back when her hair started to fall off. I admit that it was more like something to comfort me from my fears. Fears that I thought were part of her fears as well. Olivia didn't really care so much back then about her hair. In a way she taught me how to not sweat about the small stuff. We definitely have learned a lot from each other this past year!

No more dental procedure (for now)

The other day, Olivia visited another dentist for a 3rd opinion regarding her cavities. This time we went to the dentist referred to us by her oncologist. We were ready to do the procedure with sedation,  but upon discussing with her Olivia's case, she said that it's not worth fixing the cavities right now. Yeah!!! We just have to be really careful in taking care of her teeth in order to prevent further decay or worse, infection. I'm relieved that Olivia doesn't need to go through with the procedure for now, which means no additional sedation drugs on her body and one less traumatic experience. We just have to get her examined again after 6 months.

Here's Olivia enjoying her stroll after the dentist appointment.  Her hair is getting so thick now!!!

Her last blood counts showed low ANC at 750 (neutropenic again; normal is 1,500). I have been recording her blood counts and I do see a pattern now on when her counts usually go down. It helps to monitor her pattern so we could at least know ahead of time if we should take extra precautions when going out.