2/06/09: Sarah Relapses Again?

Sarah has her blood checked every Monday and Thursday. The results from her blood work Thursday indicate she has likely relapsed.

We took Sarah to Dartmouth today so her doctors could do some more blood work and confirm a relapse. Susan and I told the doctors we wanted them to focus on getting Sarah back into remission and continue moving towards a 2nd BMT. Hospice palliative care was not going to be one of our options. We see a future for and with Sarah. God has given Sarah the strength to weather a lot of adversity and come out right on top of her game. I am mightily impressed with what God has done and shown us. I am at also mightily impressed with my daughter overcoming everything that keeps coming her way. Susan and I will stand with God and lift our daughter up every step of the way.

The doctors were giving us a moderate chemotherapy and very aggressive chemotherapy options. Early in the day, they suggested we go with the moderate and use the aggressive chemo as a fallback position. The doctors changed positions (to the aggressive chemo) when Sarah’s blood work results came in though. Sarah’s blast count had climbed a lot within one day and they were pretty concerned. Sarah was admitted to the hospital and the plan is to start the aggressive chemotherapy Saturday. The doctors are conducting one more blood test (flow cytometry) to confirm that Sarah should begin the aggressive chemotherapy sometime Saturday.

The 2nd BMT is on hold until remission is held for 3 – 4 months.

Please pray the aggressive chemotherapy will not be necessary and that Sarah’s stay in the hospital will be short.

-Ben
Ephesians 6:13

2/04/09: Dana-Farber Discussion Today

Susan and I traveled to Boston to meet with Dr. Leslie Lehmann the BMT director at Dana-Farber. Dr. Lehmann did a great job sharing her thoughts and the options they’d recommend for Sarah’s 2nd BMT.

One option is to move forward as quickly as possible with the 2nd BMT. Sarah would probably be admitted in mid-March with this option. The upside to this approach is very little time for Sarah to relapse before the 2nd BMT. The downside is Sarah would not have very much time to gain her strength before the treatment. I can say firsthand that the BMT process takes a heavy toll on your body. The Dr. said we should expect the 2nd BMT to be harder on Sarah and a longer hospital stay.

Another option is to wait a little longer based on some historical learning’s regarding 2nd BMT’s. Sarah would be admitted around the end of April with this option. Dr. Lehmann said holding a remission for 4 months seems to be part of a more positive outcome for the kids that undergo a 2nd BMT. The upside to this approach is Sarah will have a little more time to gain her strength. She would also be able to spend a little more time with her family before the 2nd BMT. The downside is that Sarah might relapse again before the BMT and she’d need to get back into remission. Dr. Lehmann said her likelihood of survival would go down if she relapses again and goes for another BMT.

The last option is to wait and see if Sarah relapses again. There would be no scheduled BMT with this option, but Sarah would continue to have "maintenance" chemotherapy and maybe DLI too. The DLI would be a reinfusion of Betsy’s bone marrow periodically in an effort to initiate some GVL (Graft versus Leukemia). DLI is deemed as a fairly ineffective treatment for ALL. The upside is that Sarah would be at home a lot more. She may not need the more intense therapy of the BMT to be cured. This is the least likely approach to cure Sarah’s cancer based on the doctor’s experience.

Susan and I are going to be praying for God’s direction regarding the 2nd BMT over the next few days. Please pray that God provides the guidance we need regarding this. Susan and I appreciate the support many of you provided our family during Sarah’s first BMT. That help really made a difference for us during a very hard time in our lives. If you’ve got a little left in you, we’d welcome it again. I will update the blog with specific things that would be a big help to our family again in the next few days-to-weeks.

We are just starting to work out the logistics of another BMT for Sarah. We’re not sure what we’re going to do if Sarah is in the hospital longer this time (possibly 4 months), but we’ll work something out. The Boston Ronald McDonald House only allows 4 persons to stay overnight. We want all our children to be near the hospital this time. Please let us know if you have any ideas or suggestions.

From Susan’s last update, Jacob and John are now healthy again. Thankfully no one else is currently sick. Sarah still feels great and behaves like an (above) average 4 year old. We thought Sarah and our family would be out of the woods by now, but that’s not how God’s working it out. It’s God’s plan, schedule and timing that we are going to have to work within. Please pray that our family will have strength, courage, hope and faith as we make our way through this.

-Ben
Isaiah 40:28-32