Bone marrow stable

I got a call with the results from the bone marrow biopsy today, and there is no cancer (they didn't expect to see anything) and the bone marrow is stable for being 90 days post-transplant. She said it is at 50%, which is ok and he won't need another infusion of his cells. His liver enzymes are still slightly elevated so they will continue to watch to see why and if it continues. We will start going every two weeks now for labs, and hopefully later this week I will get his physical therapy schedule.

Ben is still in the midst of his evaluations at Phoenix Children's. It was a little hard today to see the areas that he is just not even on the same page as most two year olds. We finish that up on Saturday, and then should be able to get a plan to start him on some sort of program.

Please pray that they will figure out what is going on with Aaron's liver enzymes and that it will be a simple thing, and that I will get a good plan and program to help Ben with his communication.

Thanks!
Barbara

Scan Results

As far as tumor is concerned, the scan results were all good. There is no evidence of any activity at this point. Yea! One thing that did become evident from all of the extended blood testing is that the bone marrow and blood system are not where they should be at 90 days post transplant. This is not entirely unexpected, they are assuring me. Because Aaron is so young and his body is growing and requiring a lot, his system is under stress and "fragile". His liver is actually producing blood cells to try to keep up with the need. On Thursday they will do the bone marrow aspirate, and if it shows that the bone marrow is too fragile then he will get a transfusion of more of his stem cells. We have another bag of cells in the deep freeze that were not needed for the transplant, so if he needs a boost they are there. This would only mean one night at the hospital at most.

The main thing we need to do is still protect him from illness which would further stress his system, and try to get him to eat a wide variety of foods to gain some more weight and work towards better nutrition.

Another time of waiting is over, and I'm thankful for the good news! We will do full body scans again in three more months.

Thanks for all of the prayers that went up for Aaron this past week! I continue to see God work good things through this bad situation, and my continued prayer is that He would take this ugly thing and work it into something beautiful in Aaron's life down the road.

Thanks,
Barbara

Scans Today

It's time for the three month scans today (his last ones were just before the stem cell transplant). Of course I am pretty nervous and it's going to be a long weekend of waiting. If I ever wanted to learn patience and to learn to wait and rest in the Lord it is through the times of waiting for test results! His port was accessed at a clinic visit yesterday so that removes some of the stress for him, but they'll need to do an i.v., which never is easy on Aaron. I am going to ask that they give him Versed for that so please pray that they will listen to me. He still talks about the last i.v from three months ago, and I'd rather him forget the experience!

The California trip was wonderful and both boys had a fabulous time. We went to SeaWorld, the San Diego Zoo, and a few trips to the beach. They both loved the beach but Ben especially was thrilled to run in the waves. Thanks again to the Core family for letting us use the condo (which was fabulous and with a great view of the ocean) and to Bridget at HopeKids for arranging the free attraction tickets.

Please pray for clear scans and that the day goes well. Today Aaron will get ct scans of chest and abdomen, mri, brain mri, PET scan, nuclear medicine bone scan, x-rays of the femur, and to top it off bone marrow needle aspirates. Thankfully he will be under general anesthesia for most of it.

Also, please pray for the Dugan family. I've mentioned Amber before, but last week her body finally gave out and she lost her fight to Ewing's after five years of battling.

Thanks,
Barbara