Chemo day ; 2 years post diagnosis

Olivia had her Vincristine today and her blood counts today showed improved results. Her ANC started to go down a month ago at her last Vincristine chemo.  At that time, she was taking 100% dosage of her oral chemo. We now notice the pattern that when her dosage goes back to 100%, that's when her counts go down. When she has an episode of fever and neutropenia, her dosage is taken down by 50% of her usual dosage. However, she cannot start the oral chemo unless her ANC levels are at least 750. I have also noticed a pattern that it usually takes 2 weeks for Olivia to recover from neutropenia and get her counts back up. This month though, it took her 1 month to recover. She began this month with 844 ANC and it plummeted to 80 after a couple weeks. We had to pull her out of school again after 1 1/2 months of being back. Today, her ANC results were at 1700+! She is now back to taking  oral chemo (6MP and Methotrexate), but starting with 50% dosage again until her counts show consistent good results.

As Olivia was being examined by her oncologist, I mentioned to him that it was  exactly 2 years ago today when Olivia was diagnosed. It's hard not to recall all the things we have been through for 2 years. The doctor had a great point though. He wanted me to look the other direction - that in 3 month's time, Olivia will be done with treatment! It's definitely something we are all looking forward to!

Still Neutropenic

Olivia had her blood counts today and she is still neutropenic. We didn't get the exact ANC count but doctor was estimating it to be somewhere in the 100's. For the past 2 days, she has been having low grade fevers during early evening, but then goes away naturally. We took her to the ER again when her temperature reached 101. But once we got there, her temperature came down and normalized.  Since it was low grade fevers and knowing that she was just admitted recently, doctor adviced to just monitor at home. Her blood cultures were negative too which is good. She still has the cold though so that's probably why she's been getting the fever. Her hemoglobin dropped again to 8.6. When she was discharged last Sunday, it was at 10.5. Though it came down, it does not require blood transfusion. For now, we wait again until the blood counts next week.

I can't help but question why just now? She is almost done with treatment with less than 3 more months to go. For about 1 year she was so healthy and didn't require hospitalization or blood transfusion. The past 4 1/2 months feels like she is in active chemo again. Maybe her body is really taking the toll on all the chemo she's been taking for 2 years. At the end of the day, I am just thankful that she was so healthy for the past year. It could be worse. We still feel blessed. I know she is such a strong and brave girl. She is a fighter. I kindly ask for prayers that she recovers soon so she can be back on track with her protocol.

Home now

Olivia was sent home yesterday afternoon. Her ANC went from 200 the other day, to 230. It's still low, but at least it's trending up. She was so happy and excited to see her family!

No further tests were made from the bleeding that happened the other night. Her counts were good and the doctors can't find a reason why she would bleed that much.

Olivia will be on chemo hold until her counts go back up. She is scheduled to go back on friday for bloodcounts. The doctors changed one of her medication, bactrim, which is an oral prophylactic medication that protects her from getting pneumonia.  They changed it to a different medicine which is now an IV push every 3 weeks. They are thinking it's possible that bactrim is contributing to neutropenia and they would rather change it to something else so Olivia doesn't have to miss a lot of her chemo dose. From what I understand, the replacement medicine is slightly less effective than bactrim. But since we are at the final stretch, the doctors are probably weighing what's best for Olivia. With the 3 episodes of neutropenia in the past 4 1/2 months,  Olivia has missed a lot of doses of chemo.

Hospital day 4

Olivia has been fever free for a few days now. She is still coughing but other than that, she is active and playful. Her ANC continues to go up. It was 80 when she was admitted, went up to 136 and 200 yesterday.

Last night was one of the scariest night we've ever had. Olivia woke up at 4 am and asked to blow her nose. Before I even got the tissue,  she started crying. I turned around to see her drenched in blood. Her nose was bleeding profusely, her mouth overflowing with blood. It was pretty traumatic. She was not coughing nor blowing/picking her nose for it to cause the bleeding. The doctors and nurses came in to help right away. One of the resident doctors wanted to transfuse with platelets immediately but the oncologist wanted to have CBC done first. Interestingly, all blood counts came back good and were even better than the other day. They even did another test to see how long it woult take for her platelets to clot. I learned that even though platelets are normal, if it takes longer than normal for it to clot then there's a problem. That test came back good too. Platelets were normal and so they didn't have to transfuse. We were all just surprised why she would bleed so much if her platelets were good. It was a LOT of blood. The bleeding went on from both nose and mouth for about 20 mins non stop. I'm glad this happened here than at home or I wouldn't know what to do.

Yesterday we were told Olivia might be able to come home today if her ANC continues to go up. We are still waiting for today's results.

With what happened last night, I'm not sure if doctors would want to do tests and we would have to stay here longer. It is very dry here in the hospital which I think is the culprit for the nose bleed. But what still baffles me is why she would bleed so much.

Will post updates later.

Hospital again

Olivia was admitted again yesterday after spiking a fever of 101.9. I kind of saw it coming because she would ask for a lot of water at night and that's how she was the last time she needed to be hospitalized. She was also running low grade fevers the past couple days but because it was lower than 100.3, we just needed to monitor her from home.

Blood counts from yesterday was low and she needed blood transfusion. Her hemoglobin was 5.9 (Her normal is 10 to 11). The transfusion happened last night and today we've seen improvement in her hemoglobin. This morning her HGB is 8.6. Her ANC didn't really show improvement from yesterday. It's the lowest it has been at 80 ANC post diagnosis. The good thing is that she is 24 hours fever free. As usual, her ANC needs to go up before she can get home.

She is keeping herself busy with her new Cinderella outfit, thanks to Spirit Halloween for the event they had at the hospital! She is asking when she will come home and I always just explain to her what's going on like I'm talking to an adult. She gets it and I'm proud of her.