Next Phase & Tentative Schedule

Thursday, December 19th

Due to Avery's fever from the blood/platelets last week, they decided to keep us all day Friday to watch for more fever. At the end of the day, they gave her a dose of Rocephan which has 24 hr coverage in case her blood cultures showed growth and sent us on our way. We made it home about 6:30 PM.

The weekend was spent doing Christmas activities - seeing lights, wrapping presents, and making gingerbread houses. We also tried to catch up on tasks that were long overdue - hair cuts, shopping, closet clean outs... you name it.

Avery had to report to Clinic on Tuesday morning for labs. Her platelets were 134 and her ANC was 990 which gave them a green light to proceed with the Lumbar Puncture and Bone Marrow aspirate on Wednesday. They also took a CD34 level to see if she was in any better place for stem cell collection. Since we had to be back on Wednesday morning, we went home with her port accessed to cut down on some of the trauma/drama the next morning.

We made it to Clinic Wednesday by 8:30 and spent some time playing while we waited for the sedation team. In true Avery fashion, she put up a heck of a fight getting sedated. As soon as she was out, I got to go clean AneCream off my jeans and allow my heart rate and breathing to return to normal. Not 20 minutes later, I was going back to retrieve her as she woke up. We spent the next hour getting monitored before heading back home.

Based on Avery's last CD34 count, they believe they can do what they call Forced Mobilization to collect her stem cells without a bone marrow harvest. Her Lumbar Puncture also came back negative, meaning there were no cancerous cells found in her spinal fluid! These pieces of news were both HUGE praises and helped give us a better idea as to what our next steps will be.

Our tentative schedule is as follows:

- 12/26 - Neuro-Physch Testing

- 12/29-1/1 - Double dose of daily Neupogen injections

- 12/31 - Clinic appointment at BMT to check CD34 again

- 1/1 - Admission in preparation for pheresis

- 1/2 and/or 1/3 - Pheresis

- 1/6 - Dentist Appointment prior to Transplant

- 1/8 - Admission to Transplant Unit to begin next round of chemo

There are still a few things up in the air right now. We don't know if we will be doing a single cycle or 3 tandem cycles of marrow ablative chemo in Transplant. This will depend on how may stem cells they are able to collect, as well as, the randomization of our study. Everything is also dependent on staying healthy between now and the end of the year. We have had a lot of sickness in our house lately, and we are doing our best to protect Avery from it. A fever from a simple cold will land us back in the hospital and possibly cause delays.

Thank you all for your continued support and prayers! Please remember all of the other kids/families fighting cancer this Holiday season. Some are not celebrating good news. Some are being forced to make impossible decisions. Some are going to be away from their families, and some are having to celebrate Christmas without their child.

Unless something changes medically, we will be back to update you closer to the New Year. Have a Merry Christmas and a Happy New Year! Remember to always count your blessings no matter how big or small!