Home with Jesus

The joy Emily gave to others in life she is now experiencing to the fullest in the presence of Jesus. Her mind, body, and spirit are now fully whole. She went home to be with Jesus at 9:00 p.m., Sunday, December 30, 2007. “Emily” means “striver,” and she fought the battle hard until the end. Our hearts ache because we miss her so much, but we look forward to celebrating with her in eternity some day.

Intubation

Emily was intubated late last night and continues to be in ICU.

Back in ICU

Emily was in relatively good spirits today, but the day ended back in intensive care. There's a drug they can give only there that should help remove the fluid from her lungs. It should do the job in 24-48 hours.

Together for Christmas

Zachary flew in from NY to Orlando on Christmas Day. He was tested this morning to see if he's a match to be a bone marrow donor. We should know in a few days. What a blessing to be together to celebrate the birth of Jesus who gives meaning to life and hope to all!

In Special Care Unit

Because of respiratory complications, Emily was moved to a room in the Special Care Unit for a while so she can be monitored a little more closely. While here, she'll get a diuretic to remove the fluid from the lungs. Then she should be able to go back to her regular room on the oncology floor.

Out of ICU

Emily was returned to her regular room yesterday, but she's still having some respiratory problems and fever.

What a Surprise!

Emily was surprised by a visit from her classroom teacher and paraprofessional from Forest Middle School in Virginia! Even though she was tired, it was special getting to see Mrs. Sloan and Mrs. Isenhour and to hear about her classmates.

She’s still in ICU, but her status has improved. Her blood pressure is now normal, and we might even get to go back to the regular oncology floor today.

The results of Megan’s test showed that she is not a match. Zachary will be here next week and will be tested then.

ICU

Emily was admitted to the Intensive Care Unit at 7am this morning because her blood pressure continues to be low.

Music Therapy and a Tiring Day

Yesterday, the Guitar Man from music therapy came by. Even though Emily was tired, she enjoyed the music. Today was another tiring day after a spinal tap this morning. She has low blood pressure, a fever, and isn’t eating or drinking well.

Still Moving Toward Bone Marrow Transplant

We met with the lead oncologist today because we were getting different opinions from other oncologists. He is still confident that a bone marrow transplant is a good option for Emily and that we should pursue it.

Megan drove here from VA on Saturday and will be tested today; Zachary will be tested next week to see if either of them is a match.

A Great Day!

What a wonderful day today! Emily was strong enough to make a Christmas tree craft, go outside to get some fresh air, and have fun with friends. Mommy is back for good this time.

Pray that we will have wisdom as we ask doctors questions and make important decisions about types of treatment.

Hold Mode

Emily's two days of high-dose chemo went relatively well. We are on hold hoping to hear soon that she might officially be in remission. We won't know that until they check her bone marrow again.

Sonja had a little complication with her gall bladder surgery and had to be re-admitted to monitor her heart rate that raced up to 180. But it's down now, and she should be back with Emily again tomorrow.

Santa's Visit and Mommy's Return

While waiting for Mommy to return today, Emily got a visit from Santa. For 48 hours she’s taking a cycle of heavy chemo. Her hair’s beginning to thin and she’s been a bit grumpier than usual, but Santa cheered her up some.

Abby wheeled Sonja the two blocks from her hospital back to Emily’s this afternoon. Sonja’s gall bladder removal went well yesterday, and she's been discharged from her 3-day stay at M.D. Anderson.

A Trip to See Mommy

What an unexpected turn of events yesterday brought! A trip to the emergency room revealed that Sonja had gall stones. So she is now at M.D. Anderson hospital -- two blocks from the children’s hospital. Today, the doctor released Emily long enough for Abby to take her on a wagon ride to see Mommy. Tomorrow, Sonja will have her gall bladder removed and will be back to take care of Emily soon.

Thankfully, Emily was in good spirits and had some energy today, so our “outing” went well. Now she’s back in her room in the children’s hospital receiving small doses of chemo. We should know within a week if Zachary or Megan is a match to be a donor. Plan “B” would be to try umbilical cord stem cells. Plan “C” would be to find a match in the donor registry.

Prayer Request: Bone Marrow Match

The results of the blood tests for Sam, Sonja, and Abby showed that none of them is a match to be a bone marrow donor. Pray that either Zachary or Megan will be a good match. They will be doing their blood tests sometime soon.

All Rested Up

Emily slept almost all day yesterday after the spinal tap and bone marrow test, but today she has some energy back and even went downstairs to hear an Orlando middle school choir sing Christmas music. She enjoyed jingling Daddy’s keys as they sang “Jingle Bells.”

The chemo plan has changed a bit because of the bone marrow results. The good news is that the treatment has been so effective so far that it’s wiped out all of the leukemia cells but has also wiped out most of the healthy cells. This is normal, but they can’t be completely sure if she is truly in remission until the bone marrow starts producing again. They are planning on a light chemo regimen this weekend. Once the marrow starts producing again, they will be able to tell how much farther to go with chemotherapy during this first phase before transplant.

Mommy's Birthday

Emily sang “Happy Birthday” to Mommy today.

Tomorrow Emily has a spinal tap and a bone marrow test.

Bingo!

Emily enjoyed playing Bingo with some of the other kids today.

Day number 4 of the 29-day roadmap is bringing a few side effects: fever, fatigue, mouth sores, etc., but generally she is still in good spirits. The family members have begun taking blood tests to see who might be the best match to be the bone marrow donor.

29-Day “Roadmap”

Emily just completed her 2^nd day of a 29-day “roadmap” (chemotherapy protocol) that’s intended to get her into remission in preparation for a bone marrow transplant. --- So far so good!

Meaningful Scriptures

Three scriptures have become very meaningful to us in these past 12 days:

The peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus (Philippians 4:7).

Before they call I will answer; while they are still speaking I will hear (Isaiah 65:24).

Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand (Isaiah 41:10).

Ronald McDonald House

Here’s our temporary home! We are thankful for the Ronald McDonald House being right next door to the hospital. We can go take a quick shower or nap when we need to.