We have stem cells!

Friday, January 3rd

Avery was admitted around noon on January 1st in preparation for stem cell collection. Most of the day was spent playing games and building with Legos. We got in bed at a decent hour with hope of getting a good night of rest.... it was far from a restful night! Avery had to get simultaneous injections(Neupogen and Mozobil) in both legs right around midnight. This also coincided with going NPO( which means turning off feeds and flushing her NG tube) and starting up IV fluids(hooking up her noodle). All of this didn't go over too well(understandably at the time of night), but she was settled back to sleep close to 1 am. Unfortunately, she woke up a couple more times with stomach pain. They gave her something at 6 am to help which she immediately threw up. Finally she went back to sleep and rested until a little after 9 am.

As soon as she was awake, we had to make her mad by wiping her down with bath wipes and CHG wipes in preparation for getting her Vas Cath. We carried her down to sedation shortly after. Bless the anesthesiologist for working quickly and getting her asleep before she could get overly agitated(he may have remembered us from a previous visit). About 30 minutes later, she was being wheeled back up to her room. Avery was in a lot of pain when she got back to the room, so they worked quickly to get it under control. After dealing with the pain, she did surprisingly well. She was forced to lay in the bed all day and get countless labs and vitals. She enjoyed playing games and Legos with me, Shon, and Ms. Lindsey(our child life specialist). She even managed to be silly and give us some smiles.

The apheresis process took around 5 hours total. In that time, they removed and replaced her entire blood volume over 3.4 times. The cells will be fozen and stored until Avery is ready to receive them. This is called at Autologous Transplant (meaning you are your own donor). At UAB they perform apheresis on about 1-2 adults daily, but they only have about 6 children a year! Thankfully, they were able to collect more than enough stem cells needed, so we did not have to repeat the process today.

The worst part of the day was the removal of the Vas Cath. While they put it in under sedation, they remove it at bedside. They had to clip one or two stitches, remove the catheter(it looked to be about 7 inches long), and then hold heavy pressure for about 10 minutes. Then they put on a pressure dressing which has to stay on until later today. They also changed her NG dressing and completed the rest of the workup needed before we are admitted to transplant. We were finally discharged and made it home at 9 pm. It was a very long and tough day for Avery, but she handled it as best as can be expected. She rested well at home last night but was up and ready to go about 5:30 am.

Later today we should know more about our schedule for next week and admission to transplant. She will need a Nuclear Renal GFR scan to check her kidneys, a dentist appointment, an audiologist appointment, and repeat MRI and LP.

We plan to make the most of our last weekend at home as a family for a while.

Please continue to pray for:

- Avery's fear and anxiety(yesterday really brought a lot of it out)

- Safety and protection for the next cycle(this is much tougher stuff than the previous rounds)

- Ella and Lexi as they have prepare to be without their little sister(and me) for an extended amount of time