Saturday, May 31, 2008

Day 26 - Back in the Hospital

We're back in the hospital. Sarah developed a fever of ~101.5F midday Thursday, so back to the hospital we went.

Sarah's team of doctors told us the fever and the approximate stage of treatment she developed the fever was not unexpected. They also said we should expect Sarah to be in the hospital for a couple of weeks. To be able to leave the hospital, Sarah's neutrophil count will need to rise to >500. Susan and I have worked out a schedule for who stays with Sarah at the hospital and when. When I say schedule, I mean something we wrote on the whiteboard. We are learning a new meaning for the words scheduling, planning and routine.

Sarah is doing pretty good today with no fever and she enjoyed a nice visit with her brother Michael this afternoon. She was animated, smiled and talked some. She's not like that much anymore so it felt good to see. Her hair is starting to fall out more heavily now and she is getting a little heavy from the steroids.

Sarah's next scheduled chemo treatment is next Tuesday. The doctors will be analyzing her bone marrow and determining if she has reached remission then too. The three possible outcomes from next Tuesday are:
1. Remission - Sarah comes off chemo for a while before radiation/BMT.
2. Close to remission - Sarah stays on her current chemotherapy recipe for a little longer then reaches remission.
3. Not close to remission - Sarah begins a new more aggressive chemotherapy regimen with possibly uglier side effects.

We'd really appreciate your praying for outcome #1 above. I must say God is making us nervous, but we are still with him because we know he is with us.
-Deuteronomy 20:1-4

Wednesday, May 28, 2008

Day 23 - Hurry Up and Wait

Susan and her dad took Sarah to the hospital yesterday for her weekly round of chemotherapy. We will not hear any news regarding remission until after her next visit. It's a little frustrating, but we hear what we hear, when we hear it. Susan and I feel pretty good about Sarah's doctors and really appreciate their approach and abilities.

Sarah had a pretty rough start today and it really did not pick up as the day went by. She had one new drug added to her chemotherapy recipe and we think it moved her nausea up from mild to moderate. She wasn't able to hold her breakfast down this morning and didn't want to eat today. We are hoping the effects of the new drug will wear off as the week progresses. We are going to be transitioning Sarah from Tylenol to Tylenol w/Codeine for pain management tomorrow. Her pain is still pretty solid.

Susan's sister has been staying with us to help out over the last few weeks. While she has been a very big help, Susan and I think she should return home soon to be with her husband and son while we have a "lull" away from the hospital. We are hopeful she will be able to come back after Sarah enters radiation/bone marrow transplantation therapy.

Our other children had a really good day though. They managed to get some home schooling in and were helpful to Susan and each other. One of Susan's friends brought dinner over (again) too.
-John 14:16-18

Photo on above is of Sarah w/her mom at the park on Day 21.

Monday, May 26, 2008

Day 21 - No Walk in the Park

Sarah's last few days have been tough. She has been very tired and sad a lot. She has had a good bit of joint and back pain. Cried in the morning, cried in the afternoon and cried in the evening. We don't know if this is specifically due to her low red blood cell count or other chemotherapy related side effects. The Tylenol we treat her with helps a little. We think her hair is starting to fall out a little more noticeably now. The hair falling out doesn't bother Susan and me much when viewed relative to more serious potential side effects.

We took Sarah to the park today so she could get a little sun and not lay on the couch/bed all day long. Maybe a little change of scenery and surroundings would lift her up a little. She fell down as soon as we got to the park and was not interested in anything except crying after that. Sarah's evening did pick up after a nap when we returned from the park. She smiled, talked a good amount and actually laughed a little. We are learning to call that a good day. Actually, we easily find things to be grateful for every day. Maybe we look for them more than we did before Sarah's illness.

Due to Sarah's chemotherapy, she is neutropenic (abnormally low # of neutrophils). Neutrophils are white blood cells that fight bacterial infection. The doctors tell us that we need to avoid public places that might result in some form of bacterial infection. Maybe we should steer clear of the park and stick to the front yard next time.

And, as it turns out, Betsy and John will not need to be isolated after the vaccinations in preparation for donating bone marrow. The suggested isolation was a false alarm that Sarah's doctor later recanted. Man were we glad to hear that. Sarah's grandparents were relieved that the two BM donors didn't need to be isolated too (they were going to be isolated with them in their RV for 3 weeks).

I think Sarah's next hurdle is achieving remission so she can move onto preparing for the bone marrow transplant. We'll share more details on Sarah's remission status on the next posting.

I would like to say that I am not able to bring to mind the number of folks that have offered and provided support in countless ways to our family. It has a deepening and enriching effect on your faith. I am thankful for God's mercies.
-Lamentations 3:22-24

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