Quick check up

Today we took Olivia back to the doctor as she hasn't been feeling well. It's been 5 days since her last IV chemo and we noticed her unusual weakness for 3 days now. She is usually not this tired after chemo since she started maintenance phase. She also has not been eating well even with dexamethasone which always increases her appetite. She would tell us that she is so tired and requests to get carried. She has a slight cold but no fever. What we find odd is that she has had a cold before but wouldn't be as weak as she is now.

The doctor says she is definitely fighting an infection that's why she is so weak. She also developed some mouth sores, which is common for chemo patients, that's why she hasn't been eating well. Put those 2 things together, we have an unhappy camper. The good thing is she has no fever so at least her body is working hard to fight the infection.

We were also told that an infection can cause an increase in the liver function number (ALT). We still have to come back to the hospital next week for the scheduled blood work to find out the main cause of the elevated count. Basically right now her liver is working more than it normally should (5x more than normal). Doctor advised not to worry too much about it for now. It gets dangerous when it reaches 20x her normal count. And that's why it's good to monitor these levels regularly.

We ask for your prayers once again that everything with her liver will be ok. Thank you very much!

Monitoring liver function

Yesterday was chemo day and Olivia decided to come in her doctor gear. The night before, she was playing doctor with me and I was acting scared of the injections. She told me to be brave just like her! She could be a great doctor one day!

All her blood workfrom yesterday were normal except for a 5x increase in her liver function number (ALT count). Doctor is suspecting it might be due to her increased dosage of one of her chemo (methotrexate). She started to increase dosage probably 2-3 months ago and it was based on her weight. We will have to come back in 2 weeks for more blood work to monitor her liver function. For now, we were advised to keep the dosage the same at home.

Hoping and praying everything will be ok.

Snow play

Olivia had so much fun playing in the snow! I realize, this was her first time ever playing in snow because before she got sick, she was too young then to appreciate the snow. Last year at this time, she was mostly tired and not up for any snow play at all. This year was great for her and even for just a little bit, she had so much fun outside! She played in the snow for about 10 minutes until she got tired. She just had her IV chemo 3 days before the snow day and the meds were probably still affecting her. As soon as she got inside the house, she fell asleep for a few hours. She was really tired, but it was worth it seeing her so happy!

Christmas Eve Chemo

We spent Christmas eve morning at the hospital. She had a scheduled spinal tap and chemo that day. Same time last year, Olivia was also at the hospital on Christmas Eve. She was confined in the hospital then for about 2 weeks already due to suspected meningitis. It turned out it wasn't meningitis and we were able to go home on Christmas Eve night after a spinal tap procedure. This year though, we decided to bring her brother with us and made it a family affair. We wanted to show Olivia our support and that families should be together on Christmas Eve as well. She was so brave during the procedure! She didn't even cry when her port was being accessed. It was a quick in and out procedure. Here she is waking up after being sedated for the procedure.   

                                  

Beginning this 3rd cycle of maintenance, her dexamethasone dosage increased because of her weight. We can immediately notice the side effects of the increased dosage as she was more cranky than ever. It was like the first month of treatment all over again. Dexa lasts for 5 days but the side effects appear longer than that. It's hard, but I just always remind ourselves that if we are having a hard time, it is harder for Olivia to go through so many emotions because of the steroids. The other day, our 5 year old son was watching one of Olivia's old videos and he said he missed the old Olivia. It has been so hard for him to witness all of Olivia's side effects from chemo. I just make it a point to always explain that Olivia needs our love during these times more than ever and that it will be over soon.

Wish granted

Olivia's wish was finally granted! Through the Make a Wish Foundation, our family was able to spend a week vacation in Florida where we got to visit a lot of theme parks. Olivia had so much fun! She had the best time ever. She truly deserved it. It was a great experience and I'm glad organizations like this exist. We saw so many kids' wishes being granted as well and it's just truly amazing for all the kids and their families. I am glad Olivia was healthy the whole trip!

                             

Thankful!

It's been a while since my last post. Today as we celebrate thanksgiving,  we think about many things to be thankful for. We are thankful for the gift of life, family and friends. Most especially for Olivia's healing. This week, Olivia will be on her 1st year of remission. Definitely something to celebrate for. God is good!

Olivia is doing well, although she has been experiencing discomfort in her legs again. The other day she was even limping while walking. Tomorrow is chemo day so we will definitely ask about her legs again.

Wishing everyone a happy thanksgiving!

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!