Saturday, April 4, 2009

4-04-09: Hard Day

Sarah's PICC line was installed in her left arm and she started chemo Thursday.

Yesterday the oncologist told us Sarah's kidneys looked like they were getting ready to fail after the first dose of five of chemo. Sarah's fluid intake was increased in an effort to protect them and we moved forward with dose two. Sarah's heart was also in jeopardy since her potassium had dropped and the added fluids would potentially drop her potassium more. Potassium supplements were added to offset this. Thanks to many prayers and God's continued mercy, the second dose of chemo didn't shut any of her organs down and her electrolytes were within acceptable values today.

More goods news, her WBC (including blasts) dropped from 26k to 18k after the first dose of chemo and from 18k to 1k after the second dose. Were were hoping for a response like this and hope to see the her cancer burden drop further tomorrow. We did stop the chemo after day 2 due to her adverse reactions. We'll see what tomorrow holds for us tomorrow.

We are so glad to see this day end. Today has been one of the worst days we have had since the beginning of our cancer journey. Ben says the stress has aged him at least five years. It all started at around 6 am. Sarah developed a 104.2F fever accompanied by nausea and extreme physical discomfort. She spent the entire morning thrashing about and crying "Mama" and yet she was so uncomfortable we couldn't touch her. Her fever broke through the early morning dose of Tylenol but the second dose did finally kick in after about 2 hours. Sarah's breathing was very labored and her heart rate was at 200BPM at one point. The oncologist told us Sarah would probably not be able to breathe on her own by the end of the day and that she thought Sarah was dying.

To make Sarah more comfortable we increased her Ativan and gave her a PCA with morphine. The Ativan was a good move and really helped get Sarah over her nausea and ease some of the fever induced discomfort. We did give her one mg. of morphine and that helped her pain but we are now second guessing the morphine. Sarah was already having difficulty breathing and morphine can suppress respiratory function. She did actually scare us by skipping a few breathes after getting the morphine. We are hoping to not use the morphine.

But at around noon Sarah started to turn around. Her respiratory rate and heart rate both slowed closer to normal. Her fever dropped and has not gone high again. She seemed to feel and act much better. She even played with a new doll for a little while. Since Sarah has improved so much we are going to try reducing her Ativan.

Please pray that Sarah's respiratory issues clear up and that her fevers clear. Also pray that her blast burden remains low, her organs continue to function properly and she doesn't get another infection allowing her to enter the clinical trial.

-Susan and Ben

Wednesday, April 1, 2009

4-01-09: Tubie Infection

Sarah is still in the hospital today. She came in for fever on Sunday night.

It turns out Sarah developed a serious line infection (in her tubies). She had surgery yesterday for the doctors to remove it. While she was still under anesthesia she had an IV put in each hand for antibiotics and other meds. We were glad Sarah was spared the discomfort of having those IV's placed. The afternoon and evening weren't too fun for her because of the IV's.

In the meantime, Sarah's leukemia count is climbing. The chemotherapy she needs can't be administered through an IV. The current plan is to continue the antibiotics through the IV's and give her a PICC line Thursday to begin chemotherapy.

Sarah has begun to feel better after a few days of antibiotics. She played in Asa's crib with Asa and Christopher this morning.

The clinical trial folks will not be ready for Sarah for several weeks. To enter the trial she must be free of infection and she has to be off chemotherapy for 2 weeks. I think removing her infected central line and the antibiotics she is on will correct the immediate infection. The chemo that starts Friday should bring her leukemia burden down too.

It's going to be a long 3 weeks.
The video below is Sarah and her little brother Christopher.
-Ben

video

Sunday, March 29, 2009

We finally managed to make a decision on the clinical trial facility. St. Jude in Memphis was the winner. Our main reason for choosing this hospital was because it is closer to our families. The housing issues have also been resolved. Habitat For Hope is going to house us and for no cost. We didn't even know about Habitat For Hope but found them through a friend of a friend.

Tonight as we were preparing to sleep Ben and I realized that Sarah had a high fever. Thankfully she was responsive and alert. Ben and Sarah left for the hospital about ten minutes ago. It was hard for me to let him take her but one of us needed to be here with the rest of the children. We should have called our emergency contacts but I didn't even think of it until just now. So if you are on that list I may be calling you in the morning.

A very tired and worried,
Susan