Emily’s Smiles through Difficult Trials

OK all, I know the updates are behind, please forgive me. Memorial Week Holiday at the beach and I hardly know my name and haven’t had opportunity to give a brief update until now.

Emily did have her lumbar puncture on Tuesday and felt pretty good afterward. Because it takes a few days for results and it was approaching the holiday, Dr. G. granted permission to go “homie home” for Memorial Weekend. So, she and Trey have been begging to go to the mountains, ride horses, etc. and it seemed the perfect opportunity! Dawn & Eddie grasped this wonderful chance for the 4 of them to spend some quality time on a mini vacation and they took off to a quaint little mountain cabin near Banner Elk. I believe they had a little fishing pond where the kids enjoyed some fishing. Eddie called me Saturday and said they’d been to Grandfather Mountain, Linville Falls (I think that’s right) and were headed to ride horses that afternoon. They seemed to be having a wonderful time and if anyone deserves a break, the 4 of them sure do! Plans were to be home this evening (Sunday). Emily has to be back at Duke on Tuesday for more labs, therapy and the “usual” rounds. I’m sure that once Dawn gets back to her computer, she will share their exciting vacation happenings with us! We all just Praise the Lord that Emily felt like going off and they were able to enjoy some quiet family time together, just the 4 of them!
Love,
Stephanie

Had another inpatient visit. We were a bit nervous about this fever and infection, especially when it a type of staph thats hard to control and in her lines. Situations change and Emily and I are back in the apartment. Dr. G sent us home this afternoon around 5:30 p.m. We were not sure this morning what might happen. Last night one Dr. was thinking the lines might be removed this morning due to her low blood pressures, which they said may indicate the infection is still there but with no fever. Drs. said we could not take any chances with this type of staph infection. Things continue to improve overnight and she was feeling good, so we were able to pack up this afternoon. She had been on three different antibiotics, she received two of the last doses today, and sent us back to the apt with Vancomycin every 8 hours, and a pre-med 30 min before the Vanc. She continues on the TPN and Lipids at night over 10 hours. She weighs a big 32 pounds. She is trying to eat more, tonight she finally ate 1/2 of a 1/2 of P.J. sandwich and 3 pieces of cucumber with ranch dressing . Paw Paw arrived just in time to help us pack up and take us back to the Apt. He will be here for a couple of days. Tomorrow, Emily will have the Lumbar Puncture, and we pray for great news. I will keep you posted.

Love, Dawn and Emily

Emily’s fever has come down, thank goodness! They have established that she has a bacterial and staph infection in her chest lines. The doctor has said they will remove the existing lines and replace with a new port pretty soon. The existing lines were particular to the treatments she was having, chemo, stem cell transplant, etc. The new port will be suitable for any needs she has now such as blood, platelets, etc. Emily is feeling better and has visited the Children’s Clinic, got her paint & craft supplies, and the infamous “TRIKE”. She has enjoyed visiting her old friends on the floor but is anxiously awaiting getting out of the hospital next week. At this time, it looks like she will have to remain in the hospital until after her Lumbar Puncture on Tuesday, so maybe Wednesday she’ll go back to the apt. for the Memorial Day weekend, then we’ll see how long before she comes “homie home” again.

The laptop is having a few “issues” and we can’t correspond as quick as usual, but I will keep you updated as Dawn & Eddie update me. Please continue to remember Emily in your prayers as she is a walking testimony of our loving God and answered prayers!!

Love, Stephanie