Emily’s Smiles through Difficult Trials

There is HOPE to be found, even in the midst of affliction.
Eddie & Dawn recieved the MRI results late this afternoon and I’m afraid it wasn’t good news. Emily’s pain is from the tumors that have continued to grow along the spine and the spots in her brain have gotten larger. They will meet with the Radiation Dr. on Wednesday and hope to start radiation treatments soon on her back in hopes to relieve some of the pain. She can have up to 2 weeks of radiation, none to the brain. They currently have her on high dose meds for the pain and she continues to fight with all her might. Emily is a strong willed little girl and has a very high tolerance for pain as those of us that see her all the time can attest to. The Topetecan chemo has been halted and while they wait to get the radiation schedule, Dr. G will be in contact with NY Sloan Hospital to see if Emily qualifies for the Phase 1 Protocol program there. Radiation will probably begin on Monday, but until they meet with the Dr., they don’t know for sure. Emily hopes to get to come “Homie Home” on Wednesday afternoon so she can enjoy playing at home before the radiation treatments begin.

Please pray that Eddie & Dawn will continue to seek the Lord’s comfort in this time of trial and pray that Emily will be spared great pain. They continue to be steadfast in their Faith, Hope & Trust in the Lord’s will that Emily will be healed. What an inspiring, strong Mom & Dad they are, a blessing to all who know them.

Love, Stephanie

“Be glad for all God is planning for you. Be patient in trouble, and always be prayerful.” Romans 12:12

We had a great time at the Kenny Chesney concert!!!! Emily wanted to watch everything! She sat for the two opening bands, then sat on Eddie’s shoulders for Kenny. No one sat down when he came on stage. We had great seats, up front, and Trey danced the whole night and Emily sang along smiling great BIG. It was hot, had to be the hottest day of the year. 102 on the van thermometer, driving there. That did not stop her. She sang herself to sleep in the van on the way back to the Apt.

We are back at the apt. as of Sunday evening, 8/12 and finally get to read our messages. I will read all of them to Emily. She always wants to know if she has any messages. Thank you for sending emails and messages.

Emily had chemo last week, and has been taken off TPN and Lipids as of Monday 8/6. She has been eating more and keeping her food down with her nausea meds. Her pain has been progressing this past week and she has had alot of problems putting weight on her legs and back. We thought after 2 days of being home we were going back to Duke, she could not sleep. Spoke with the PA and she spoke with Dr G. and I had asked Jean if there is any way we could stay home until we had to be back on Sunday (12th). Emily was upset because we just arrived home, and last time home we had to go back quick. Jean is so good about these situations, and talking with Dr. G. He said we could wait to do the MRI until Monday (today) like it was scheduled, and that what I was describing sounded like inflammation of the lining of the spinal cord and nerves due to the chemo drug. She called in some pain meds. Emily and I may be in trouble later because the meds only helped slightly, but Emily said she wanted to stay home and see Dr. G on Monday as planned. She cannot stand up on her legs long and she still has a hard time while she is falling off to sleep. I think she hurts alot more than she will admit. Eddie and I could tell even at camp how much she would try to cover the pain. At first we thought it was the surgery from the new port. Then during the next week during chemo she started saying it was her legs and back.

This week at home she has had trouble standing and has to sit down to play. She watched Trey at football practice one day. Next we took her to the sound to play and she felt good to float in the swimming ring to take off the weight from her legs. She had fun sitting and eating boiled P-nuts Uncle Durwood and Aunt Cheryl sent, and Chocolate Chip cookies from Heather and Audrea. Brad grilled hotdogs while we played in the water, and snacked the whole time. She tried to do just as much as she could do this week, and we are happy she was able to be home and enjoy being in her room. We feel this is important to Emily at this time.

We were happy to be back at church on Sunday, Emily stayed home but it was great to see everyone again, and know they are all praying for us. Today we hope to find out if there is more that can be done for her pain, and she had labs and total brain and spine MRI. We started at 8:00 a.m. We pray for positive news from the MRI, and Lumbar Puncture on Tuesday. She is already planning her time back at Homie Home.

Will update soon, Love, Dawn & Eddie

Hopefully will get the “scoop” on the Kenny Chesney concert from Dawn & Emily this evening. They have come home for a few days and while here do not have internet service, so Dawn can’t just email it. Sorry! I do know they went because the girls from Ward Realty got to see them there!!! They were excited, said “Emily was so cute in her pink cowgirl hat and boots!”. I understand it was very hot that evening but I’m sure everyone had a wonderful time! So, check back later for the “scoop”.

Stephanie