Abby's Journey Archive

Just after Abby was diagnosed, some friends of ours from church (Amy and Steve G.) came to spend the evening with us. They had a son that was diagnosed with Fanconi Anemia--Caleb was a joyous little boy who caused everyone around him to smile involuntarily. Fanconi typically leads to bone marrow failure in most of those afflicted. One treatment for FA involves a bone marrow transplant, and they elected to attempt this, but sadly were not successful. Caleb died in April of 2002. (http://www.calebglover.com/)

Amy and Steve bared their hearts to us that evening, trying hard to pass on some things they had learned about having a desperately ill child, and how to simply cope when you spend days on end in the hospital and you seem to know your doctors better than your own family members.

Something that Caleb's mom said to us has stuck with me over the past 9 months--"this is not normal." That, along with her experience spending lots of time in the Psalms, were two of the pieces of advice that most helped me over this time.

I had to remind myself of this again when Abby went into the MRI chamber this afternoon. She was nervous and worried that it was going to hurt. I kept thinking that we had done this all before, many times. And yet, Amy's words kept coming back to me--"this is not normal." Of course, it's not normal. Kids are supposed to run and play, swim and scrape their knees, build towers with Legos and dress up like princesses, go to school, have sleepovers.....not spend afternoons in an MRI machine under anesthesia.

But sometimes the abnormal is the road you take before you return to the normal. About an hour after Abby got out of recovery we stood before Dr. Shafron and heard him announce that her scan "looked great." He had already talked to the radiologist, and we would get a complete report later, but there didn't appear to be anything to be worried about now.

It seemed kind of anticlimactic in a way, but as we drove home I realized that I was relieved, but sort of numb. Yes, we will have to go back in about 3 months for another scan, and PNET tumors do recur fairly often.

And as we contemplate a return to "normal", even for a while, I find myself wanting to keep parts of the "abnormal"--God had many reasons for allowing this experience in our lives, I don't want to throw away important life elements or allow cruft that hindered our relationship with Him to return.

But, for now, we are "normal" (mostly) again. What a relief. What a reason to praise God.

We leave for Abby's followup MRI at Phoenix Children's in just a couple of minutes. She is a little apprehensive about the "sleepy medicine", but we have been praying often with her over the past day or so, and that has made all the difference.

Over the past few months we have been blessed because God has opened our eyes in so many ways. Our uniquely American, secular, logical, technologically driven world view can be so deceiving. Like so many other things (and if you have ever had any college-level physics, this will probably make more sense to you) it is a frame of reference that we use to try to make sense out of life. Frames of reference often leave chunks of experience unexplained.

American culture often dismisses the spiritual as irrelevant, or "personal", not to be discussed or processed with others. Our experience has taught us nothing can be farther from the truth.

Like Paul says in Ephesians 6:12: "For our struggle is not against flesh and blood, but against the rulers, against the powers, against the world forces of this darkness, against the spiritual forces of wickedness in the heavenly places."

And we have also come to more clearly appreciate family time--this past weekend we took Saturday to spend together as a whole family, going out to breakfast, going to the Arizona Museum for Youth, and getting haircuts--everyone including Abby (just for fun)--see attached photo. For some reason our hairstylist didn't charge us for Abby's cut.

Abby is no longer neutropenic. Her counts are back up again so no more neupogen and she doesn't need to see the Oncologist for a couple of weeks. At Abby's request, we all had salad and Granny Smith apples with dinner. Of course, we had to offset all that healthy food with McDonalds chicken nuggets and fries too.

We'll keep you posted as things happen. Thanks again for praying!

Abby has an MRI scheduled for Thursday, January 20 at noon. Please be praying for a clear scan.

Thanks!

Abby went to the oncologist today and her counts were recovering, but she is still neutropenic. Her monocytes (one type of white blood cell) were in the normal range which tells us that her immune system is kicking back in again. The neutrophils will follow soon. Her hemoglobin and platelet counts were also good.

Abby was quite sad that she was still neutropenic (all our kids LOVE their fresh fruits and veggies and she can't have either when she's neutropenic), but she was glad that they discontinued her antibiotics and pulled her port access.

We will go back on Thursday to check her counts again.

On a more somber note, please pray for a little girl we met in the hospital during Abby's last chemo. Her name is Ava and she is almost 6. She is battling a very aggressive glial brain tumor and her treatments are not making a significant difference. Her mom seemed so disheartened when I spoke to her. I can only imagine what a heavy burden they are carrying.

Thanks!

We brought Abby home from the hospital today. Initially we were a little frustrated that the doctor wouldn't let Abby go home on the 31st, but a late afternoon set of labs revealed that she needed another red cell transfusion. We were reminded that God has a reason for everything, even if it isn't immediately obvious to us. So, Abby and Mommy had a fun New Years celebration together at the hospital and Abby got to sleep through her transfusion at night.

We were able to keep Abby cheerful with a little amusement at the hospital during this stay. We decided to have a little fun with Abby's doctor and her cheerleader Barbie doll. The doll has removable letters on her shirt. Daddy and Abby spelled out " I want 2 go home" on her shirt and Mommy hung Barbie on Abby's door. Josiah wrote the greeting to the doctor. He and the other nurses and CNA's were amused and the doctor claimed we were engaging in "Barbie torture".

So, now we will administer antibiotics at home until Tuesday morning when we will go check her counts. She is already on her way up, so we are optimistic she will no longer be neutropenic by Tuesday.

The next step is to have an MRI sometime the week of the 10th. We'll post when we get the exact date. You can begin to pray that it will be clear of any sign of tumor.

We hope you'll have a great beginning of 2005.