Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Sunday, October 21, 2012

Infusion #3..and good news!

Meagan went for her third stem cell infusion at Duke Children's Hospital last week.  It was a crazy hectic week leading up to the trip, but we managed to pull everything together with the help of family and friends and make it up to North Carolina on time.

Not too far from Duke, my good friend Lori's daughter was in a skating competition.  Since the location was so close, we figured it would be nice to go watch her in a few events in between our obligations at Duke.  We enjoyed having the break and being a mini "cheering" section. Meagan also got a "good luck" snuggle from Lori.

Brian's sister and her family live about 2 hours from Duke University, so after the skating competition we headed to their house to drop off Maura.  They were nice enough to offer to keep her while we were at Duke with Meagan.  That way she could just relax and play and we could focus on Meagan while in the hospital.  Maura also enjoyed seeing her cousin who is her same age.  

Meagan checking out her cousin

Maura had so much fun staying with her cousin 

We had the infusion day routine down by this point.  It was a gorgeous sunny week last week for the most part, so it was nice to have a hospital room next to an outside window.  In the down time, Meagan enjoyed playing with her toes and having some quality time with Daddy.

Meagan also made sure to have her "special" items nearby.  Her blanket from her Godfather and her little elephant from her Godmother. Both items have been with her since the NICU!

June, the nurse who works with Dr. K in the stem cell program, was so happy to see Meagan again.

One of the best things about the study Dr. K runs, is that she is always concerned with the whole child.  As I've mentioned before in other posts about Meagan's infusions, they always have a music therapist on site to soothe the children while they get the stem cells.  It serves as a calming mechanism, and also a distraction for the children from any pain or discomfort they may feel.  Trey, the music therapist at Duke Children's, came by for a visit to say hi to Meagan again.

As soon as the cells were thawed, June, Dr. K, Trey, and other nurses came in to start Meagan's infusion.  Meagan is normally a really hard stick, but Dr. K managed to get her on the first time.  Also, Meagan normally cries the minute a nurse or doctor walks into the room.  This time, she did not make ONE sound.  Not even while getting her IV.  She just stared at Trey and listened to the music.  It was the most calm I have ever seen Meagan in a medical setting.  I couldn't believe how well she tolerated the procedure this time.

Once Meagan was finished, she was hooked up to fluids to make sure she didn't become dehydrated.  Within a few minutes, she was completely passed out asleep.  She must have been exhausted and had a really good nap.

Meagan was passed out - she was in a deep sleep!

Waking up after her sleep 

Dr. K came back in to check on Meagan.  She looked great so the fluids were unhooked and we were free to go at that point! We had to watch Meagan that night, and call in the morning before we left to let them know she did fine.  We also got a follow up picture with Dr. K.  It was almost a year from the very week of Meagan's first infusion, and first meeting with Dr. K.

Meagan did great! She was such a trooper through the long trip and an even stronger girl through the whole procedure.  Everything, for the most part, went as expected.  But there was one thing that was a nice surprise... and some very good news!  Dr. K told us that Meagan actually has enough cells for a fourth infusion! We are very excited at this prospect.  Meagan is due for an MRI this winter - after those results are in, we will have a phone conference with Dr. K and her team and go from there.  We may do a fourth infusion sometime this year, or we may save the remaining cells in case there is ever a setback in the future.

I do believe the stem cells helped Meagan's vision immensely after her first infusion.  After her second infusion, I didn't see anything as drastic as her vision improvement, but, I did notice her becoming much more social and alert within the first 2 weeks afterwards- trying to smack her lips, being more attentive to human voices and communication, etc....  This time, I am very happy how things have been going since we've been home.  I'm not going to say anything just yet because I don't want to spoil it, but, I do see some exciting things in a few areas...all of which are brand new since her latest stem cell infusion last week. Hopefully these new things continue and we will have a new update soon.  In the meantime, it's back to reality and catching up on laundry and other things that fell behind while we were away at Duke.
Meagan says thank you for all the help and prayers!


  1. Adding more prayers, and including the wonderful team that is treating Meagan.

  2. I'm glad the infusion went well. Reading everyone's experiences with it makes me wonder if we should have done this for Ellie, although I guess I can't do anything about that now. I'm excited to read about the positive effects!

    PS - I love Meagan's shirt in the pictures.