12-11-08: Shifting Ground

Sarah was released from the ICU tonight and returned to the children's inpatient section at Dartmouth Hitchcock. The ICU team did a great job getting Sarah's blood pressure stable. Sarah will not be sent home until her blood pressure is manageable with meds Susan and I can administer. We are hopeful she will be sent home over the weekend. We are ready for it!!

Sarah was fairly unresponsive today. Speaking was labored for her. She is having difficulty getting words out. She also has hand tremors and difficulty grasping and holding things. She did this Wednesday evening and most of today (Thursday). Interestingly, she was normal Thursday morning and the symptoms appeared sometime before lunch. One of Sarah's oncologist told us it was due to the 4 doses of Oxycodone she received to today to manage her headaches. Susan and I really want to believe that's what's going on. We are going to avoid giving her the Oxycodone and see how she does Friday.

I stayed with Sarah Wednesday night. It was very difficult to see her lose touch with reality so strongly and for such a prolonged period of time. Susan and I had a lot of anxiety over the same behaviour Sarah had today. I'm staying with Sarah again tonight and it was particularly hard after Susan left this evening. Sarah struggled in vain to answer when I asked her if her head hurt. She could not get the words out. She just barely eked out two strained words "I want...". She tried many times to express what she needed, but could not tell me. I decided to just give her a dose of acetaminophen, but her nurse said she could not have it. The doctors were concerned about liver related complications. I could not bring myself to give her more Oxycodone. Sarah was tired so I managed to get her to sleep with a little physical comforting. I have to say, this tore me up inside. It also resulted in much prayer by me that Sarah not suffer. Please do the same.

It definitely feels like Sarah and her family climbed a steep mountain only to find the ground shift and we are at the bottom of the mountain again. I'm not convinced yet that knowing the path up the mountain this time will make it any easier the second time around. It seemed surreal the first time, but to be asked to do it all over again just sounds impossible. Faith in a God that does the impossible comforts me.

Good news on the playhouse the Make-A-Wish folks are doing for Sarah. They finished the groundwork and a number of my colleagues at DEKA went to our house and unloaded the playhouse parts (thanks guys). Check out the link to see the progress.

I dropped the traditional BMT counting sequence in the post titles. It just doesn't seem to work any more. I suppose I'll start using it again as the second BMT starts approaching...

-Ben
Hebrews 11:6

Day +136: ICU Tonight

Sarah is in the Intensive Care Unit tonight. Her blood pressure spiked unexpectedly late this afternoon. We think it may have gone as high as 185/130. We are not sure as it was pretty hectic when the hospital staff finally got the vital sign equipment to register her blood pressure. The normal piece of equipment would not register a blood pressure, so they tried another just like it and it would not register a blood pressure. Sarah then yelled out that her head was "hurting really bad". They rolled in another piece of equipment and got multiple high blood pressure readings that dropped rather quickly, but leveled off around 150/115. At about the same time as the high blood pressure measurements, Susan noticed the red blood cell transfusion was pumping at a higher rate than it was supposed to be. The pump battery died and the nurse reset the pump rate wrong. The staff assured us the higher rate was too low to cause the headache or increased blood pressure, but we were skeptical.

At any rate, her blood pressure is normal now and she'll be monitored in ICU all day Tuesday. Sarah's blood pressure has been elevated since she began the chemotherapy, so she will likely go home on blood pressure medication. The CAT scan Sarah had to check her brain came back normal too. It was pretty scary for a little while today.

The good news today is her oxygen level is solidly good and her calcium is now at a normal level. Sarah's calcium has been low for a few days and she couldn't go home until it was normal. She will go home on calcium supplements too.

It looks like we will not go home until Wednesday at this point. Certainly Sarah needs to be in the hospital until she is stable.

We still feel good regarding Sarah's dropping WBC and feel confident she will be going home soon.

-Ben

Day +135: Sending Sarah Home

Doctor Chaffee (Sarah's oncologist) is talking about sending Sarah (and the rest of us) home on Monday perhaps Tuesday. This is due to her excellent response to the treatment she has been given over the last five days.

Sarah's white blood cell count (WBC) has dropped over the last 2 days and as of about 2 hours ago it was at 1,100. Her peak WBC during this relapse has been 140,000. To put that into perspective a normal WBC is between 5,500-15,500 per microliter. The lower than normal WBC is wonderful news and indicates the cancer cells are dying very effectively. She has had a major hematologic response meaning the chemotherapy/Dasatinib treatment is working relative to her blood, but we do not know about her bone marrow yet.

Sarah's will be have a bone marrow aspiration on about Dec. 16 or 17 to check her bone marrow cancer level (cytogenetic response). We are praying that Sarah's bone marrow will be clean and free of leukemia. Once her bone marrow is defined as free of leukemia cells then she will tested for molecular remission. Ultimately we want her to reach and stay in molecular remission.

Sarah had jaw and leg pain yesterday from the Vincristine chemo she is on. She only had leg pain today, but apparently it hurts pretty bad. You have to carry her places like the bathroom or she cries from the pain. So, I was very impressed by her this afternoon when she said she wanted to go for a walk. I put on her shoes and pushed her pump cart as she walked (or really hobbled slowly) beside me to the playroom. I do not know what she was thinking, but she must have known that it would hurt pretty bad to take that walk. I think she just wants to be normal again.

Basically, Sarah is headed in the right direction and her therapy appears to be working. We thank God for what he has done and is doing. Susan and I are thankful that God directed us to choose this course of treatment. We will continue to pray for his guidance and that he will direct not only us, but Sarah's doctors too.

-Ben
Psalm 31:19-24