Emily’s Smiles through Difficult Trials

Eddie said it was busy the past couple days at Lowes. Beautiful weather!! Thinking about everyone at home wish we were there. Emily is having fun here with Granny Mom and she is getting ready for Camp Debbie Lou complete with pink cowgirl hat and pink boots. Hope she will feel good for the trip to camp. She is still on antibiotics and no fevers. We pray Emily’s surgery will go well and she will be riding horses on Friday. Racing Trey with gocarts on Saturday, and fishing everday!! We can’t wait!!!

Talk with you soon. Dawn

Just a quick update, We have been to hospital clinic this week for labs and cultures. Today ( Thurs.) Spoke with Dr. G and cultures are coming back postive for infection in the lines with her taking antibiotics. This could be a dangerous situation he said if the antibiotics are not working, and the infection starts to increase, so they have scheduled for her Pheresis catheter to be removed and a new port to be placed. We have pre-op Monday and Surgery for the removal and placement of the Port on Tuesday. Emily and I will remain in Durham until Thursday Morning. We have to be back in Hospital Clinic on Thursday morning because the needle will have to be removed, before we can leave to go to Camp Debbie Lou. We will meet Eddie and Trey at camp on Thurs. Then leave Sunday to drive back to Durham, for the next week of chemo treatment.

We will continue antibiotics through next week ( Friday ). Emily is ok about the new Port she is happy that the pheresis lines are being removed because she can go into a pool and finally have a real bath, and splash, splash, splash with this type of Port, after it heals. So this makes up for not coming home on Sunday. Our 2 week break has turned into a 3 day break, but we are just thankful she is continuing to do well with just a small amount of discomfort, on certain days. She is sooooo excited about her Birthday next month. Her last one was in the hosp. She has talked about her birthday since the last one. She can’t wait for her friends to be with her again. She saw the ad for party city and wanted to go so bad and look at all the stuff. Every Wednesday she looks for that ad in the mail box. Her stuff was 50% off this week so Emily, Nana and I shopped for some supplies then came home and she wanted to “organize” what she bought. She had the best time planning her party. She is counting down the weeks and this gives her something to look forward to.

Nana drove up on Monday when Eddie left, then Grandaddy and Trey drove up to pick her up on Wednesday afternoon. Trey wanted to see us but had football practice at 6:30 so we spent a little time together and I told him I would see him Sunday, but schedules change as he knows, and he is excited about being together at Camp.

We pray this type of chemo is working, and next MRI is scheduled for 8/13, then Dr. G will know more about the oral chemo. Emily will need to be able to swallow pills for this. Please continue to pray for Emily’s healing and strength.

Love, Emily and Dawn

We are back at the apt. Long day for Emily. Another set of Xrays during the dye imaging to detect the clot, she has had so much radiation it scares me to think how much total within this past year. She had a CT and chest Xrays when she was in the ER on Sunday, to rule out infection in other areas, before Neuro would draw from her ommaya reservoir to check for infection in the spinal fluid. We are so thankful the reservoir was not infected. This morning we saw Dr. G and his PA for exam and consultation. The nurse injected TPA into the line and left it in the line for three hours. Then tried to get a blood return and no luck so we went to radiology for the dye and Xrays. A small clot in the line. As we were down in radiology removing the heparin from her line we started to get a blood return. Yeah!!! Then back up to the 4th floor for cultures and antibiotics. We were happy to know we can stay at the apt. and treat the infection with antibiotics. She is still running a fever but low grade. We are close to the Hospital so I can have her there quickly. We will go to the childrens clinic daily for evaluation and cultures until 4 days of negative results. We hope to be Home Sunday afternoon after the appointment.

We had a call from the Camp Debbie Lou and we can go the next week. Yeah!!!! A family canceled due to the child’s Make a Wish trip being ready. Emily is so excited, and this makes up for this week not being Homie Home. As the camp director said “it is meant for Emily to be here“.

Eddie and I did not mind if we had to stay in the ER for another 12 hours as long has Emily’s reservoir did not have to be removed. Prayers were answered once again! Emily will start another week of treatment on Monday 7-30-07 after the trip, then 1 week off and 1 week of tests. MRI, Labs, Lumbar Puncture, Ommaya tests, Dr. appointments. Then Maintenance Week– Week of treatment once a month with another MRI on 11/12/07 Have not heard about the oral chemo at this time.

Trey is excited, Paw Paw said he is ready for football camp, this week. I told him just make sure you wear your mouth piece!!!!!! , catch the ball, and run run run so you won’t be tackled and I won’t worry so much. Thank You for all the prayers and thinking of us. Thanks for helping and caring for Trey.

Love, Emily and Dawn