Emily’s Smiles through Difficult Trials

We hope Pam and the family are doing better. We continue to pray for her healing heart. It has been a few days since our last update, but we have been busy. This past Friday ( 23rd) Emily had school lessons and then went to the eye clinic at the hospital and Emily had her third eye exam and the Drs. are saying Emily will not need surgery. The problems she was having with her eyes have corrected on their own! I said, “does this usually happen” and they said “no not usually”. I think they were a little surprised themselves. She had physical therapy at the apartment in the afternoon. Saturday 24th, we had appt. at the hospital to check labs and Emily needed platelets, we were there for 4 1/2 hours, then Emily practiced her walking outside. The weather was nice. Monday was very busy in clinic, we arrived 9:30 for labs, and I knew she would need a transfusion her hemoglobin was 8.3 on Saturday. We waited for a long time then around 12:15 after they drew her blood asked us to come back. No isolation rooms were available, returned around 2:45 and she needed platelets and blood. We left at 8:00pm. Today, Emily had school and Physical Therapy, She has been doing good and trying hard with her walking. Today while outside with Lisa her P.T. Emily was walking in the grass and she had to bend over and pick flowers and try to keep her balance. We found clovers growing and I found a 4 leaf clover !! Tomorrow I get to be the teacher, to give Emily a break from going back to the hospital, and she will have physical therapy in the afternoon. Emily will start Occupational Therapy on Thursday and will have therapy 2x a week. She is trying to eat, but this is still a problem, Dr. G will want to remove her Pheresis catheters as soon as her counts recover and no blood products are needed. This will reduce the risk of infections. Next week we may start to decrease dose of the nightly TPN and Lipids that keep her nourished. This may start to increase her appetite. We are trying to keep her from having a feeding tube. Emily is getting excitied about returning home. She is so thankful all the chemo is over. Her counts are still low and she is receiving GCSF in the mornings until counts recover. Emily’s strength is increasing and she is proud of her accomplishments. She can’t wait to play with her friends, dance, play T-ball, and go fishing. Thank You for continuing to Encourage her.

Love, Emily and Dawn

Emily is back “home” at the apt. and doing well! She is full of excitement and anticipation that she will be headed “homie home” to Hampstead soon! Yesterday she was pushing her walker, waddling with a roll of toilet paper between her knees, CLEANING UP, she told her mommy! Eddie got home last night with a load of “stuff” he brought back from Durham. Each trip now will be like that as he begins to get things ready for Emily & Dawn’s return home. Dr. G. is pleased with Emily’s condition and says she will have to remain up there for at least 4 more weeks. At some point, before returning home, they will have to surgically remove her port cath in her chest. Until then, she continues with her therapies, trying to eat whatever she can, and dr. visits. Please continue to keep her in your prayers as she enthusiastically prepares for coming back home to us!!!!

Emily did good today receiving her stem cell transplant. Late this afternoon, she was back on the Trike. Went to the 9th floor, first time we had been to see the Duke Lifeflight Helicopter on the roof of the hospital. It was landing as we watched outside the windows. It was so close. There were two pilots waiting for the helicopter to land. One pilot came over to Emily and said “lets go outside and check it out”. We went up the long big ramp, Emily thought that was so cool and went to the Helicopter and touched it and was ready for a ride. But we had the pole and all the hookups with us, and she was ok with that excuse. She said “Mommy, Trey should have been here!!” Then the pilot came to her room with Duke lifeflight plush helicopters for her and Trey. After a short break and check on the moniters she was off again Trike bound for the Tram. It was the perfect time, no one was around and we rode over to Duke South had the whole place to ourselves and Triked all over Duke South. Rode the Tram back and fourth a couple of times, it was dark outside and Emily loved the fast ride down the track in the dark, with the big window view. When we returned she had a small bowl of coco puffs and held that down, but also ate some popcorn, and that didn’t. She said, “at least I am trying”. She was very tired and ready to go to sleep. Tomorrow she will see her physical therapist and hope we can return to the apt. in the afternoon. She was excited to finally finish, and “No more Chemo, Mommy”. We will continue with Physical and Occupational therapy as outpatient treatment when Emily is feeling up to it. There will be Clinic appts and Drs. Evals during the next weeks. We pray for no infections or fevers. Will have a more set schedule at a later date. Thank You for keeping Emily in your Prayers.

Love, Eddie, Dawn, Trey and Emily