Monday, December 31, 2007

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.

Saturday, December 29, 2007


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

Thursday, December 27, 2007

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.

Wednesday, December 26, 2007

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!

Saturday, December 22, 2007

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.

Friday, December 21, 2007

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.

Wednesday, December 19, 2007


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

Tuesday, December 18, 2007

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.

Monday, December 17, 2007

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.

Friday, December 14, 2007

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.

Thursday, December 13, 2007

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.

Wednesday, December 12, 2007

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.

Monday, December 10, 2007

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.

Saturday, December 8, 2007

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.

Friday, December 7, 2007

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.

Wednesday, December 5, 2007

Mommy's Birthday

Emily sang “Happy Birthday” to Mommy today.

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

Tuesday, December 4, 2007


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.

Sunday, December 2, 2007

29-Day “Roadmap”

Emily just completed her 2nd 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).

Saturday, December 1, 2007

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.

Friday, November 30, 2007

Central Line In

Emily had her surgery for central line placement this morning and everything went well. She is glad to have full use of her hands again now that the IVs have been removed.

Tomorrow starts the high-dose chemo. We are a little nervous about side effects, etc. Thanks for your continued prayers.

Her counts were great today due to the two transfusions yesterday. Her spirits are still top-notch. Not having to be poked on a regular basis will also help her attitude since they can use the central line for just about everything. She is still a little protective of her new line but she will soon get used to that.

Thursday, November 29, 2007

Cussing Like a Sailor !?!?!?!?!?

It's good we’re not hard-core cussers because Emily repeats everything she hears! As it is, she knows the word "crap" and used it quite liberally this morning with the nurses. The PICC line they put in yesterday came out first thing this morning. So what did we get to do first thing but stick in a new IV!!!

The doctor said - infection or not - they are putting in the central line tomorrow so they can continue the antibiotics and begin the induction chemo.

The steroids they have her on have elevated blood sugar and super-elevated hunger. She is even stealing chocolate right out of her sister's hand. She wanted a cheeseburger at 10:30 last night, but I placated her with cereal and veggies. They will be stopping the steroids today. ~ Sonja

Pet Therapy and Bone Marrow Transplant

Emily loves dogs, so pet therapy at the hospital is one of her favorite things.

The oncologist is moving us more in the direction of a
bone marrow transplant. He said that Emily is a better candidate than he first had thought.

Wednesday, November 28, 2007

Outcome of Procedure

While Emily was under anesthesia today, three things were accomplished:

(1) Scope: They put a scope down her esophagus to see if the source of the infection was in the heart or in her stents. There’s no evidence that the source is there, but they’re going to treat the infection as endocarditis anyway. So she’ll get intravenous antibiotics for that for about 6 weeks.

(2) Spinal Tap / Lumbar Puncture: They gave her chemo in the spine and took a sample of spinal fluid. We should have the results of that tomorrow.

(3) PICC: They inserted a Peripherally Inserted Central Catheter and have removed the IVs that were in each hand.

Tuesday, November 27, 2007

Procedure Tomorrow

Tomorrow Emily will undergo a procedure to see if the infection might be in her heart or in her stents. Three of the blood tests so far have come back positive for infection, but they haven’t figured out yet what the cause is. So they’ll put a probe down her esophagus to take a look.

Her white blood cell count has come down even further to 1,900, which is great! (30% of these are leukemia blasts.) The oncologist was encouraged by this.

Monday, November 26, 2007

Good News

The leukemia counts are down from 240,000 six days ago to 3,600 today. It's just amazing that she's responding so well. We are thankful!

It might be a week now before the central line can be put in because she has to be infection-free for 48 hours before they do it.


Emily's blood test shows that she has an infection. So the surgery scheduled for tomorrow to put in the central line has to be delayed until the infection goes away. Now we're just in waiting mode.

Sunday, November 25, 2007

A Good Day Today!

Emily had a wonderful day today! She was given platelets, which always energizes her. We actually were able to roam the hospital and have a little fun. (The pic shows Emily and her friend Madison with Mickey in the lobby of the hospital.)

Also, another bit of GOOD NEWS --- In response to steroids and a small dosage of chemo, her leukemia cell count dropped from 240,000 to 36,000. This makes the possibility of a bone marrow transplant more of an option.

Saturday, November 24, 2007

A Little History of Emily

Some of you have asked to know a little about Emily’s past, so here goes… When Sonja was pregnant with our 4th child, we thought the most unique thing about Emily was going to be that she would be born at home with a midwife like her sister Abby had been. Little did we know how uniquely God was knitting her together.

"Down Syndrome" --- We knew very little about it but knew we had to begin learning when the midwife said, "You must be a special couple because God has chosen to bless you with a beautiful Down syndrome girl." She pointed out the low muscle tone, low-set ears, the single crease across the palm, and the absence of a neck as evidence. None of that mattered, however. Emily was a gift from God, and we already loved her.

"Tetralogy of Fallot" --- Our vocabulary was rapidly increasing. We had never heard this term until the cardiologist explained that this heart defect would require corrective surgery. At 5 months of age, Emily had surgery to correct the problem -- at least temporarily.

"Low Oxygen Levels" --- As a complication with the heart situation, Emily's lungs were not able to work hard enough to provide her with sufficient levels of oxygen. As a toddler, she spent a year connected either to a tank or machine 24-7.

"Leukemia" --- Our medical knowledge reluctantly began to stretch from the cardio and pulmonary worlds to the oncology field. I confess that I surrendered the task of remembering long lists of drugs, therapies, treatments, and follow-ups to Sonja. I tried to keep up with everything by writing it down, but it would often change. Thank the Lord for a wife whose attention to Emily's care got us through nearly three years of treatment.
Through it all, Emily taught us the value of finding joy and contentment in our circumstances. We watched how concerned she was for the challenges others faced. She was always ready to bless others with a cheerful greeting, an expression of concern for their hurt, or a simple gesture that said, "I want to make you laugh and enjoy life!"
For 15 months after chemo treatments were over, Emily experienced the longest stretch of health she had ever known. We praise God for these months and the laughter and joy we shared during them.

"Relapse #1" --- Our faith was tried as we began to relate to some of the anguish David expressed in the Psalms. Why would God allow such a sweet, innocent creation of His own to suffer like this, not just once but repeatedly? Didn't He know what He was allowing to happen to her and to us? I can't say that our questions were ever fully answered, and we don't really expect to understand until we see Jesus face to face.
What we do know is this. God used Emily and many others to teach us lessons about life and the character of God. We continue to learn the lessons He has for us each day.

"Kissing Stents" --- Somewhere along the way, we learned this cute-sounding little term, too. It would solve the problem with the growing thickness in Emily's arteries. The two stents were installed and since then have been repaired a few times.

"Relapse #2" --- This is where we are today after 5 months of being off treatment from Relapse #1. It's too recent to try to express all that we're thinking and feeling. But I don't think that it's a coincidence that we discovered this the day before Thanksgiving.

Yes, "Thanksgiving!" Had we written the script, sure, we would have written it much differently. Are we hurt and confused? Definitely! But we are without a doubt THANKFUL! We have had 13 years of a delightful adventure with someone who taught us more than the most eloquent speakers and profound authors of our time.

Thank you, Lord, for Emily! We are humbled that You chose to share this treasure with us, and we will thank You even in the midst of confusion and pain.

Sonja's Thoughts

Thanks for your thoughts and prayers.

This really has been a tough couple of days. Sam and I have been pretty much in agreement that we would probably not pursue treatment since it didn't look like the transplant was a viable option and Emily had already had two relapses after going through years of chemotherapy treatments. But yesterday Dr. Don spoke to a friend who does transplants. She said that actually they have done some recent studies with Down syndrome and transplants and have done some adjusting with the preliminary chemo. They are finding results much the same as the general population. Which before they were saying the Down syndrome kids were not doing very well with the process, so they weren't recommending it.

So we are reconsidering.

If Emily could completely understand and verbalize, she might want the chance. I'm thinking other kids would.

They also did tests on her heart yesterday, and she is doing well in that department. We still would do a full consultation with a transplant doc. Sometimes they won't take a kid if they are too high a risk. They are going to give her some chemo today to see if the cells will even respond.

Please pray for wisdom and peace. We want to do what is best for Emily. ~ Sonja

Friday, November 23, 2007

Some Good News Today, 11/23/07

We did receive some good news today. Emily's heart is much stronger than they had thought. This would make the possibility of doing a bone marrow transplant more possible.

This weekend the oncologist is going to try a low dose of chemo to see how quickly the leukemia cells will reduce. If it seems that the chemo is moving her toward remission, that will be another positive indicator that a bone marrow transplant might be more of a possibility.

Megan is flying back to Virginia tomorrow to finish up her semester at Liberty University.

Sonja and I continue to be grateful for the prayers of our brothers and sisters in Christ.

Wednesday Before Thanksgiving

Our family drove to Orlando for a teachers’ convention and was going to spend Thanksgiving with friends in Daytona Beach. While here, however, our 13-yr-old’s leukemia relapsed. This is her second relapse, and this time it doesn’t look good at all. Her kidneys are not performing as they should, and the oncologist has advised us against traveling with her.

They most likely will not put Emily through a third regimen of chemotherapy since the first two times did not keep her in remission. A bone marrow transplant is a possibility, but it’s extremely high risk and rarely is successful with Down syndrome children.

We’re waiting for more information, but the prognosis right now could be a maximum of two months.

Most importantly, we value your prayers as we know that it is only God’s grace that has carried her this far and that has given us strength through this long journey.

As untimely as this seems, she is surrounded by doctors and nurses who are familiar with her, and our Daytona Beach church family is not far away. (Pray especially for my wife Sonja. She is taking this very hard, as we all are.)

We love you and are thankful for you. ~ Sam & Sonja