Trip to the dentist

As soon as we started maintenance phase, we asked the doctor if Olivia can see the dentist again. She has the clearance to do so and today was her 3rd visit since birth. Her first couple visits prior to diagnosis were good and she had no cavities at all. In today's visit, we found out that she has a couple of cavities. It is most likely because of her diet.

I somehow feel guilty  allowing her to eat a lot of sweets that could cause cavity, but it's just hard to say no to her especially if that's all she wants to eat. That's one of the things that's hard with chemo. Their taste buds are so different and there's specific types of food they only want to eat. Drinking a lot of chocolate Pediasure in the middle of the night doesn't help either.

That being said, she will need to get evaluated if we need to fix her cavities. She will have to go through sedation for the procedure. The risk of not fixing it could cause the cavity to reach the nerves, which can lead to an infection. That is the last thing we want to happen. Because she is still in chemo treatment, wherein chemo lowers her blood counts, there's a risk of bleeding too if her platelets are too low. And of course in any dental procedure, theres always a risk of getting an infection. At this point, she will need to be evaluated by another dentist we were referred to and we would need to discuss with her oncologist if it is even worth fixing the cavity now or wait till she is done with treatment.

Olivia's last checkup was Friday last week. Her blood counts were good and she has been in good health. There are days when she would look pale, but as long as her counts are good, we try not to worry too much.

1st week of Maintenance

What I've heard about the maintenance phase was that there will be more structure in our lives than it has been in the past 9 months. The paranoia will still be there at least in the beginning, afraid that our child will get easily exposed to viruses and could cause problems in her current condition. Although Olivia can resume doing a lot of her normal activities, I could see that it might not be as quick of a transition one would like to think. I think it's perfectly normal though and I think Olivia will get back at it in her own time.

Olivia taking short naps in the car while we're out

1st week into maintenance and I can visualize more now what it would be like for the next year and a half. Every month, Olivia will be taking dexamethasone for 5 days, the steroid that causes mood swings and increased appetite. She just finished her 5 day meds and the mood swings have started, as well as her appetite! She has been having issues with her legs and stomach again but massages make her feel better. She still gets tired very quickly and we find it a little bit hard to take her out to family events because she would most of the time ask to go back to the car and sleep. We understand her limitations and so we definitely select events that she goes to.

Part of her daily meds require her to fast and that's been challenging too because of the increased appetite. Somehow I like the increased appetite because it gives her a little boost, which is helpful when she goes through periods of not wanting to eat. I just don't like the fasting part. We have had this regimen before but it only lasted for a few days/weeks at a time. This time in maintenance,  she would need to follow this schedule everyday.

I feel bad not giving her food when she asks but I just try to explain to her that the medicine won't work if she eats right away. I try to think about how to handle giving her meds when we're not at home as it requires a lot of prepping. I'm sure we'll get used to it at some point, and get better at the routine as we go along.

Other than that, Olivia is doing well and has been spending quick trips to the beach which she enjoys very much.

Maintenance Phase begins

Today we are officially in maintenance phase! Her spinal tap procedure went well and quick today. Like antibiotics, we are just continuing her chemo treatments to make sure the cancer doesn't come back. She has been in remission since December 2014 and we want to make sure she achieves complete remission.

From now until the next year and a half, Olivia will follow the 'ARM B' path based on the randomization results yesterday. This means she will be getting IV chemo every 4 weeks, with continous oral medications at home. In terms of frequency of chemo, it is the same as the 'ARM A', or the standard path, if we hadn't signed up for the study. The dosage of chemo however is increased. The doctor was explaining that there used to be 12 arms/paths before and now has been decreased to 4. Even the time span of treatment has significantly decreased from where it has been. It is through all the data from other kids that lead to this. And now we feel proud to be part of this worldwide study that one day could lead to a better cure for cancer. None of the medication are clinical trials. All meds are the same as what she has been taking. The clinical study really is just about the frequency and dosage.

For the first cycle (every cycle in maintenance is 3 months), Olivia is scheduled for more frequent check ups as her blood counts are expected to come down again.

Getting ready for randomization

We have been getting anxious for tomorrow to come when we will find out Olivia's chemo schedule for maintenance phase. Olivia is part of a clinical study wherein her lab samples and results are used in a study that hopefully will eventually find a cure to childhood cancer. Part of this study is a process called randomization which results to 4 different paths of treatment during maintenance phase. This will determine how often Olivia will be getting IV chemo (and what dosage) throughout the balance of her 2 1/2-3 year course treatment.  Same as many families out there who went through/are going through this similar situation,  we were hesitant at first in signing up for the study and at the back of our minds,  we just want the standard route. But we realize that we probably wouldn't be where we are now if it weren't for other kids who participated in this study many many years ago. The survival rate of leukemia patients have definitely increased over the last decade. The doctors have reassured us that all paths have shown positive results throughout the years. And if there were any signs that 1 path is worse than all others,  they would have immediately put a stop to it. We trust our doctors and most especially our God who is in charge of it all. We know that whatever path we get is what is best for Olivia towards a complete remission. At the same time, this is one way of giving back for all the blessings that have come our way. We are one with everyone else wanting to put a stop to childhood cancer.

Olivia will have blood tests tomorrow and if she is ready,  maintenance phase officially starts on friday.  She will be getting spinal tap and a few chemo and she will be sedated for this procedure.