Emily’s Smiles through Difficult Trials

Emily will remain in the hospital again tonight. She is doing well and beginning to tell the nurse what they need to do and when! That’s our Emily! Her little head does hurt somewhat from the “Ommaya Reservoir”, but she refuses to take pain medicine. She’s a tough little girl! Friday they plan to do another MRI before lunch and hopefully then release her to come “homie home” just for the short weekend because she must be back early Monday morning for labs and other testing in preparation for the chemo to begin. They will be doing a “cerebral spinal fluid flow study” with injected radioactive compound. This will monitor the spinal fluid flow with this new reservoir.

Right now, it appears that the chemo will begin on Monday, June 11. The drug choice therapy will be “topotecan”. This is the name, as I understand it, of the chemo drug. Still do not know the exact schedule for it regarding how many days at a time, possibly 5 days to start with. Emily’s spinal fluid has to be monitored almost constantly with this new treatment. She will be learning a whole new routine to be able to tell those nurses what to do!

Please continue to keep the family in your thoughts and prayers. Looks like it may be a while before they’ll be home for any length of time again. They still have the apt. in Durham that cards and well wishes may be sent to. When Emily is hospitalized I’ll post her room # for everyone. Will keep her journal updated as I have info. Remember, no news is good news!

Love,
Stephanie

Emily had her surgery to implant the reservoir in head this afternoon about 3:15 p.m. Everything went well and when last I spoke to Eddie, she was in recovery and doing well. Dawn & Eddie are hoping that she will be able to come “homie home” on Thursday evening and stay until she heals from this surgery, which will take about a week. Hopefully we will have confirmation on that by mid-dayThursday, after the doctors have checked her over.

Thank you to everyone for sending Emily, Dawn & Eddie such encouraging words on the message board. I can’t begin to tell you how much the prayers and support mean to them. Please continue praying for Emily and her family as they face the difficult road ahead. The faith, strength and determination of Emily, Eddie & Dawn, will surely guide them through this round of treatments that Emily faces.

Love,
Stephanie

“FAITH is being sure of what we hope for and certain of what we do not see.” Hebrews 11:1

Many of you have heard Emily’s news this afternoon but I wanted to clarify as much as possible. I pray that I get all the news correct as I am translating via phone communication. When Dawn gets a few minutes, I’m sure she will correct any blunders I make. For now though, I will do my best.

Emily’s cancer has not gone away. She has another tumor and it is medullo again. There are also spots & lesions on her spinal cord. Her body still does not make platelets and replenish the blood cells so chemo cannot be administered through her veins. She cannot have anymore radiation. On Wednesday afternoon they will implant a “reservoir” in her brain where chemo can be administered straight to the central nervous system. They have to make sure the spinal fluid flows properly through this line. This surgery has to heal, appx. a week, before another lumbar puncture and then chemo will start. Each time it is administered her little head will have to be poked to access the reservoir. Right now it looks like the chemo will be: 2 weeks on/1 week off, 1 week on/2 weeks off, 1 week on/3 weeks off. Probably start in about 10 days from tomorrow is a guess at best. No idea yet whether she will be hospitalized the entire time during treatments or what, as the protocol is not known at this time.

Emily is a strong little girl and we must continue to pray that God will see favor to heal her. These next weeks will be the hardest fight yet. I will keep everyone posted via the website as I have info available. Their apt. mailing address remains the same and if she is hospitalized, I will advise the room # as I know all of you will want to send cards and care packages. Please keep Emily, Eddie, Dawn & Trey in your prayers. Get those messages of hope and encouragement rolling in on the message board.

Love,
Stephanie