On Thursday, June 12 (the week before Ashley went to Camp), we took Ashley up to Children's Medical Center in Dallas to have an MRI done. This was to be her first follow-up MRI after the completion of her six weeks of radiation. The purpose of the MRI was to go back and take another look at the original site of the tumor, and the site on her spine where the spots had originally shown up, to see if there was anything still there. The presumption was that the remnants of the tumor and the spinal spots would be completely gone, meaning that the radiation had accomplished its intended purpose.

We arrived at Children's between 6:00 and 6:30 PM on that Thursday. The MRI was scheduled for 7:30, and was to be done using contrast, which would be injected into Ashley's system via her port-a-cath. Well, to make a long story short (which, actually, is NOT one of my stronger skills!), the port-a-cath was clogged somehow. The nurse accessed the port-a-cath, but was unable to get a blood return. (When the needle is inserted through the skin into the port-a-cath and a syringe is attached to the needle's accompanying tube, blood should be easily drawn back into the tube when suction is applied with the syringe. That wasn't happening, meaning that there was a blockage somewhere in the port-a-cath.) The radiology nurse tried a couple of tricks to unclog the port-a-cath, but to no avail. Since the MRI required the contrast, it was called off for that night. It would be re-scheduled for the week that Ashley would be hospitalized (this week). We left Children's that Thursday night somewhat frustrated.

MORE PORT-A-CATH PROBLEMS

Ashley was admitted to Children's Medical Center yesterday, Monday 06/23, to stay the week and receive the first week's worth of chemo treatments on the 48-week protocol (though she had already received six weekly Vincristine injections while she was taking radiation). We arrived at Children's at about 9:30 AM, and were told to report to the 6th floor Hematology/Oncology Clinic. Nurse Jillian would access Ashley's port-a-cath, go ahead and draw blood for her weekly blood work, and then leave the port-a-cath accessed for Ashley's chemo treatments.

We had not seen Jillian in about five weeks, and it was a delight to see her red hair and sweet smile! Jillian got us set up in one of the treatment rooms, and we began the usual banter of chit-chat and small talk, catching up on the past five weeks while Jillian prepared all the paraphernalia necessary to access Ashley's port-a-cath. Jillian did her typical marvelous job of making Ashley feel at ease as she stuck the access needle into the port-a-cath. She flushed the line with saline solution and drew back on the syringe to make sure she got a blood return. Nothing. She tried several times. Nothing. Ashley contorted her body all kinds of ways, and at one point even got off of the table and jumped up and down, trying to coax her blood into the blood-sucking contraption. No luck.

This had happened to Jillian once before with Ashley's port-a-cath, and she had successfully unclogged the obstruction with an injection of urokinase. She tried urokinase this time, with no success. She then flushed the line with an injection of heparin, and stepped out of the room to discuss the situation with a couple of other nurses. When she stepped out, Ashley told Susan and me that when Jillian injected the heparin, it hurt right above her port-a-cath. I stepped out in the hall to relay this information to Jillian. She came back in and examined the area where Ashley said it hurt, and there was some obvious puffiness. I assumed that this was caused by the heparin backing up into Ashley's tissues because it couldn't get through the port-a-cath into the bloodstream. The decision was made to do a dye study to see what was going on with the port-a-cath.

So off we go to radiology. Ashley is injected with dye through her port-a-cath, and then a special machine is used to take a series of x-ray pictures that show up instantly on a computer monitor. The dye showed that Ashley's port-a-cath was, in fact, completely occluded, and the dye was backing up in the other direction out of the port-a-cath. The doctor who conducted the dye study wrote her findings on a sheet of paper and sent it with us back up to the Hem/Onc Clinic. I gave the paper to Jillian, she went to talk to some people, and then came back and told us that Ashley's port-a-cath would have to be replaced.

It was now early afternoon, and we were sent up to Ashley's room to wait for her to be called for surgery. At about 2:00 PM, we were told that she would be taken to pre-op at about 3:00, for surgery at 3:30.

SECOND PORT-A-CATH SURGERY

A little before 3:00, the surgery transport team came up to the sixth floor to take Ashley down for surgery. She went into surgery about 3:30 or 3:45. The surgeons implanted a new port-a-cath on her left side just below the chest area, and then surgically removed the original port-a-cath which had been placed on her right side about three months ago. The operation was a complete success, and Ashley made it through surgery beautifully. When I went into the post-op ward, she was conscious and really looked good. She was in post-op for probably about an hour before she was transported back up to her room. Now we had a port-a-cath that actually worked and could be used for her chemo treatments.

CHEMO STARTS

Late yesterday afternoon, after being returned to her room following surgery, Ashley's nurse hooked her up to an IV through her port-a-cath, and began a saline solution drip for hydration. We would have to wait for her "specific gravity" to reach a certain level before the chemo drugs could be infused. The specific gravity was determined by testing her urine with little paper strips that turned different colors depending on the specific gravity.

• At 10:00 PM, Ashley finally went to the bathroom, but her urine was still too concentrated to start chemo. So we waited. More IV fluid was needed in her system to dilute her urine to the required specific gravity level (exactly what is meant or implied by the specific gravity of her urine output, I don't know).
  
  
• At 12:30 AM, Ashley went to the bathroom again. The nurse came in and did the little paper strip test, and the test showed that her specific gravity was at an appropriate level to start chemo.
  
  
• At 12:40 AM, Zofran (anti-nausea "gold" medicine) and Mesna ("bladder wash") were added to the IV solution.
  
  
• At 1:15 AM, after the Zofran and Mesna had been given time to work their magic, 610mg of cyclophosphamide (Cytoxan) was added to the IV, to be infused over a 30-minute time span.
  
  
• At 1:45 AM, after the cyclophosphamide had been completely infused, 120mg of VP-16 was added to the IV, to be infused over a one-hour period. A blood pressure monitor was also hooked up to monitor Ashley's blood pressure throughout the one-hour VP-16 treatment.
  
  
  • Initial BP (blood pressure) was 97/48, HR (heart rate) 86.
  • 2:00 AM ..... BP 86/48, HR 80.
  • 2:15 AM ..... BP 93/40, HR 85.
  • 2:30 AM ..... BP 99/49, HR 86.
  • 2:45 AM ..... BP 104/50, HR 85.

MAKE-A-WISH

Yesterday evening, our social worker from Children's (every patient is assigned one) came by our room to visit us. Her name is Diane, and she has been extremely helpful ever since we first met her during Ashley's initial hospital stay back in March. This time, Diane had in her hands an application to the Make-A-Wish Foundation for the granting of a wish. Ashley has talked several times about wanting to go to Disney World, so we will see if anything comes of this.

By the way, many people have the misconception that the Make-A-Wish Foundation only grants wishes to children who are TERMINALLY ill. This is not correct. So please don't become alarmed and think that this is a sign that Ashley's cancer has been labeled "terminal". It hasn't.

THANKS

Thanks again to all of you who have been keeping Ashley and our family in your prayers. Your prayers provide us with strength and comfort. Please pray that Ashley will continue to respond well to the chemo treatments; and please continue to pray for her complete cure!

God bless you!