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.

September is childhood cancer awareness month

September will now always have a deeper meaning in our family because it is the month of childhood cancer awareness. Before Olivia got diagnosed, I had very little knowledge on childhood cancer. As time passed by, we slowly learned about the disease and one that's very eye opening is the statistics. According to the American Childhood Cancer Organization, 1 in 285 children in the U.S. will be diagnosed with cancer. Every 3 minutes, someone, somewhere in the world will find out their child has cancer. It is devastating to hear those words. We've been there. But eventually you try to move on, survive and hopefully inspire other patients and families to have courage and keep going. Survival rates for many types of cancer have improved through the years but not everyone has the same fate. People who survive may suffer other life long threatening diseases, including secondary cancers. I remember during the first few days in the hospital with Olivia, I couldn't sleep at night. I kept waking up crying with the thought of falling under the 15% that do not survive. It was like nightmares every few minutes. It was very difficult then, and even 11 months later, it still gets hard at times. Our family and friends' love and support kept us going. And for this, we try to give back to others every chance we can. I continue to hope and pray for 100% survival rate. 

We do hope that this blog can continue to inspire others, and serve as awareness on a family's life with childhood cancer. I salute those who have fought hard and are continuing to fight this battle. And to our supporters, THANK YOU from the bottom of hearts.

Managing mood swings

Olivia is currently on dexamethasone,  the steroid that causes mood swings and increase in appetite. She takes it twice a day during the first 5 days of every month as part of her maintenance protocol. The side effects of it lasts longer though. Just imagine a kid who is always cranky and hungry for half of the month. She is really happy one moment and then cries inconsolable the next minute. She gets very sentimental with the little things. We've seen it the worst during her 1st month of treatment so what we see now is nothing compared to how she was. My husband and I have learned how to manage the situation the best way we could. I can see through her and know that deep down inside is this sweet and cheerful little girl who is just sick and tired of all the medication and needle poking. It is not her fault that she is in this. We just try to make her feel that we are all in this together.

If there was someone other than Olivia that I admire the most during this most difficult time is our 5 year old son, who through it all has always tried to understand what we are going through. He mostly takes the brunt of Olivia's "episodes" and it's hard for him to understand why Olivia reacts in certain ways. He's starting to ask many questions about Olivia and it breaks my heart whenever he cries and asks how she got sick and when she will end her medications. I've been explaining to him that just before he turns 7, Olivia should be off meds and will be better, God willing. It makes him sad that on his 6th birthday Olivia will still be on chemo. He said that he just wants it to be Christmas so it will be that 1 day Olivia will just be happy. I think that's why he has started to play a lot of Christmas songs lately. Good thing Olivia is not scheduled for dexamethasone during Christmas! 

I really do hope and pray that things will get better during the dexamethasone period and that Olivia can learn to take control of her emotions. As with everything else, we know that this too shall pass.

Chemo day

Yesterday was chemo day. Because Olivia only gets IV chemo every 4 weeks now vs weekly (at times daily) in the past, she tends to get more nervous about getting poked with a needle on her port. Good thing her nurse is really good accessing her port. We've had some really bad experiences before when we have to go to the ER because the nurses there don't really access children's ports all the time and not very experienced with it.

Her blood counts have improved too. Her hemoglobin count is at the highest I've ever seen at 11.5 (normal is 12-14). Her ANC has gotten back to 2,000+ mark. Everything is looking good for her.

Her hair is getting thicker and soon she will be able to wear a clip again. The other day she wanted a haircut so I gave her a trim. She complained afterwards that there's still hair left on her head! She actually got used to not having hair!

I also talked to her doctor about her cavity problem. He preferred that the procedure be done at their hospital rather than the dental office or a different hospital. Her procedure will require sedation, same way she gets sedated for chemo. It actually makes me more comfortable doing it at the same hospital Olivia goes for chemo treatments. At least we already know the anesthesiologist and they know Olivia's case more than anyone.

Low blood counts

We were told in the beginning of Maintenance that Olivia will be monitored closely for the first three months of this phase because this is the time when blood counts usually drop. We have been going every other week for her blood tests.

About a month and a half into maintenance, Olivia's blood counts have started to plummet again. Her hemoglobin is good and has constantly been around 10 grams per deciliter (normal is 12-14). It's her ANC that dropped significantly. From being 2,200+ for the longest time, her ANC has dropped to 736 (normal is 1,500). In the earlier stages of Olivia's treatment, this level of ANC would have been a reason to delay chemo until her ANC goes back up. But now that we are in maintenance phase, the minimum ANC to continue chemo is 500. And so her oral chemo meds at home will still continue. Since her ANC is really low, we just have to watch out for fevers since she's more prone to infection right now.

Here are some of her pictures from today's hospital visit.

I can't believe how much she has grown!

Brave girl getting finger pricked for blood test

Here she is after blood counts, exploring the doctor's office and his microscopes!

First vacation

This weekend was the first night we spent away from home in a long time! We had an overnight vacation to relax and have fun with the family.  Olivia had  quick hospital visit in the morning for chemo. A few hours later,  the nurse called and told us Olivia's blood counts were good and that she's free to go anywhere she wants!  9 months ago, I didn't think that we'll be able to spend family vacations this soon!  God is good all the time.

Olivia had so much fun! There were times that she asks to go home but we just try entertain her. It's understandable that she just misses the comforts of her own home and also because she hasn't gone away from home in a long time other than the hospital. She had a lot of energy and we're just happy to see her happy.

                                 

These are Olivia's daily chemo meds that we have to bring with us on trips. We're 1 month into the maintenance phase and we have established a pretty good routine from timing the meds and the actual preparation of it. She is on dexamethasone again for the next 5 days and so we expect her to be always hungry and cranky. Patience and understanding is key.