Friday, February 13, 2009

Blood Counts Bottom Out

So we arrived at the clinic about 25 minutes late.

The first thing Sarah had done at the clinic was have her vitals checked: blood pressure, temp, weight, and height. All of those were good. Then the nurse came in to draw blood from the "tubies". After that one of the oncologist came in the check Sarah out and discuss how she has been at home. (Although Sarah was playing happily she did not seem to feel as good today. She was very tired and her skin looked a little pale.) Then we waited for the blood work to come back from the lab. And we waited. And we waited while Sarah had Pentamidine, an IV PCP prophylaxis. (It's supposed to prevent some kind of lung infection.) We waited for Sarah's platelets to come up, from wherever they come up from in the hospital. Once the platelets came the transfusion took about 2 hours.

While all this waiting was going on the boys and I did some mathematics, watched a video, and ate some snacks. And Asa decided to get a fever. No other symptoms just a far. Bad news especially with Sarah's counts being so low.

Speaking of counts here are Sarah's counts as of today.

WBC 0.2
HGB 9.5
ANC .05

Dr. Chaffee gave me a copy and a graph of all the BCR-ABL tests that Sarah has had done since she was first diagnosed in May. It's weird how we can get her into remission, twice so far, but that CANCER keeps coming back. Just another reminder that the odds are definitely not in Sarah's favor.

One last note. We restarted Sarah on the Marinol tonight and were so happy to see her eat two small slices of pizza. That pizza was the most food she's eaten in a week. Thank's Marinol!

Wednesday, February 11, 2009

Done with FLAG

Home again.....but for how long? Sarah finished with the FLAG last night, so today, she was discharged from the hospital. The chemo is definitely dropping her blood counts quickly. On 2/08 her WBC's (white blood cells) were 46.1 and today they were 3.9, PLATELETS 119 down to 50, and her HEMOGLOBIN is 10.1. The hemoglobin is good because a couple of days ago she had a transfusion of red blood cells. Counts are dropping and that means that soon Sarah will be neutropenic, fever and neutropenia = back to the hospital. With the way her blood counts look today we are expecting that to happen sometime early next week. The worrisome thing about this is that many people die from infection after getting FLAG.

Little Sarah was so happy to leave the hospital today, she was adorable as we left, saying goodbye to everyone and dancing down the hallway. She was even happier to come home to her family. The afternoon was filled with play, sometimes noisy, rowdy, running, screaming play. It was great! Sarah and Christopher had fun competing for the best spot on Grandmas lap.

Have you ever given blood? Friday we will be heading to the clinic for a scheduled platelet transfusion. Sarah will be surviving on transfusions for a while; so if Sarah inspires anyone to become a blood donor GO FOR IT. Same goes for signing up to be a bone marrow donor. It is so easy. Click here to see how.

The numbers are not in Sarah’s favor. I think they are actually way below the ten- percent mark, probably closer to one- percent. But our hope for Sarah is not based on numbers. No, we are not in denial and we do realize that our doctors got these numbers from research combined with their many years of experience. We know that God CAN make her well again. So we are going to continue asking. That is where our hope is and we are not giving up.

Tuesday, February 10, 2009


This is going to be short.

Yes, the cancer came back again. Can you believe!

We decided to try yet again to get Sarah into remission. The only option for trying to reach remission #3 was some HARDCORE CHEMO called FLAG. Which is a combination of chemo drugs and growth hormone to counteract the drugs. Also steroid eye drops to protect little eyes from conjunctivitis caused by the chemo. They expect this stuff to "knock the socks off" Sarah's counts. We checked her into the hospital on Friday evening and started the FLAG on Saturday.

So far she is doing really well. Just a little nausea, fever and some bone pain. That was all yesterday. Today Sarah has had a great day and played with her siblings most of the afternoon. Her WBC has come down from 36,ooo to around 16,000.

Ben and I continue to remain hopeful that Sarah will reach remission and be free of leukemia. Even though the Oncologist have assured us that that goal is a "high bar". Please continue to pray for that.