Abby's Journey Archive

We went early this morning to Tucson for our second stem cell collection. I didn't talk much about the first one, and didn't take any pictures (sorry). The "collector" is a large machine about the size of a washer that has a centrifuge in it. On the outside there is a large panel with several places to thread standard IV tubing. It kind of looks like a plumber's nightmare. One of Abby's lines becomes the "source" and the other one becomes the "return". They extract her blood very slowly, run it through all the tubing, centrifuge it and extract the stem cells from it. Then they also transfuse some "new" blood (from someone else) back to her. In adults they just give back saline, but kids can't handle losing that much blood at one time, so they transfuse back. She loses about 300 ml of blood. A standard blood donation (like at the Red Cross or UBS) is 500 ml.

The collection time takes about 3.5 - 4 hours including setup and teardown.

Like last time, she did great, and was a little tired at the end. The nurse told me that they actually collected almost everything they needed on Monday (she said they collected a "7", which is "very good"). Today they got the rest.

Tammy the nurse and hemo tech was very compassionate and professional, she took such good care of Abby. She never left the room during the whole procedure, and watched her closely for signs of reaction to the transfused blood. It was so nice to have her for both sessions. Abby is starting to have trouble with new faces, she has seen so many of them, and she never knows if a new face is going to be associated with something painful. So having Tammy both times was quite special.

Near the end of the collection Amy called me to tell me the results of the PET scan were back, and they show high activity at the new lesion site and "medium" activity at the original site. Dr. Shafron now says that a second surgery is "warranted." We are scheduled for Friday at 10 AM.

One wrinkle is that there is no anesthesiologist available for the pre-surgery MRI that they use to place the fiducials (the little buttons that help build the map for Dr. Shafron to use during the surgery). Abby has not yet had a non-sedated MRI. It's only supposed to last 20 minutes, but we cannot be with her, she must be completely still, and it is VERY loud in the MRI chamber.

Besides prayer for the surgery itself, we would appreciate prayer for what to do about the MRI. If she cannot be sedated, should we still attempt it? If we insist on sedation, then they will probably have to reschedule the entire surgery for later next week, which further delays her adjuvant therapy. Our oncologists are already somewhat frustrated with us (or just with the timing, we can't really tell) that it has taken so long to get to the radio/chemotherapy part of her treatment.

As for the surgery--Amy and I are just sick over having to send her to once again have someone poke around in her brain. We have a huge amount of trust in Dr. Shafron, he has been so good to us. Every time he resects, however, there is a greater chance of impairment. This is very scary. Again, we know God is in control, He has reasons for all of this we know.

I would like to believe that the second surgery is the result of our trip to DC--as we said before, if we had not gone to DC we never would have had the latest MRI, and the second lesion would have remained unfound until it grew much larger and she manifested other symptoms or we did another MRI two months into the radiotherapy.

As I write this, Amy has also posted her own update, so today you get both viewpoints. :-)

As we have both told everyone often, your prayers mean the most to us in all of this--knowing that all of you are interceding for us before the Throne is so comforting.

Abby just got back from her second and final collection. Ana said her counts today were great so they have more than enough for the infusion after her chemotherapy treatments.

Dr. Shafron called today with the results of Abby's PET scan. He said that he and Dr. Kaplan agree that there is enough activity around the original tumor bed and in the new nodule to warrant a second surgery. Unfortunately, he also said that there isn't enough research to give any indication whether this resection will change the outcome of her treatment. He said the risks of post-surgical motor weakness and peripheral vision loss are greater this time (30-50%), but this varies with each patient. Her recovery in the hospital could be up to a week.

As far as prayer requests... Please pray for Abby to have peace about another surgery and extended time in the hospital. She shouldn't have to have any pokes while she is awake as far as we know since she has the central line. But, I'm sure there will be other things she is anxious about. Also, Abby will have to do the pre-surgery MRI (the guided imaging mapping with the fiducials) without anesthesia (there is no one available). I spoke to the Child Life Specialist today and she is arranging for someone to be with Abby during the fiducial MRI and into the pre-op room. I asked about one or both of us being able to go into the MRI and Marci said she would advocate for that on our behalf.

Pray that God will use us all to be a light to everyone we'll come in contact with at the hospital. Hopefully, we'll see some familiar faces and meet some new people as well. We know God has His hand guiding our path and he has us going back to the hospital for a reason.

Pray that Dr. Shafron will have wisdom and skill in the surgery and also pray for everyone who will be working with him.

Thanks!