Happy Birthday, Sara...

"Happy Birthday, Mom!"

Twenty-nine years ago, on her mother's birthday, Sara was welcomed into the world in Pasadena, Texas. September 30, 1980 marked the first day of the "life changing" saga of Sara Sullivan.

Sara's "Celebration of Life" services this weekend were beautiful. The service on Saturday began with the 1000+ people in attendance singing praises to the Lord. We sang Sara's favorite song, "I Could Sing of Your Love Forever." Then, Sara's youth pastor, Chris, started the service by having everyone SMILE! Sara was known for her smile and this was so fitting! After discussing Psalm 23 (walking through the valley of the shadow of death), Chris encouraged people to not just remember Sara's life, but to be different because of knowing Sara. Then he talked about the legacy that Sara left behind. A dear friend of ours sang "Legacy" as the service was coming to a close.

"LEGACY" by Nichole Nordeman

I don't mind if you've got something nice to say about me
And I enjoy and accolade like the rest
You could take my picture and hang it in a gallery
Of all who's who and so-n-so's that used to be the best
At such-n-such...it wouldn't matter much

I won't lie, it feels alright to see your name in lights
We all need and 'Atta boy' or 'Atta girl'
But in the end I'd like to hang my hat on more besides
The temporary trappings of this world

I want to leave a legacy
How will they remember me?
Did I choose to love? Did I point to You enough
To make a mark on things?
I want to leave an offering
A child of mercy and grace who blessed your name unapologetically
And leave that kind of legacy

I don't have to look too far or too long awhile
To make a lengthy list of all that I enjoy
It's an accumulating trinket and a treasure pile
Where moth and rust, thieves and such will soon enough destroy

Not well traveled, not well read, not well-to-do or well bred
Just want to hear instead, "Well Done" good and faithful one...

Click the link to hear the song. http://www.youtube.com/watch?v=Vbi4nSrhRxo

After the song, Chris gave an invitation to the group, allowing those who wanted to experience the peace that Sara had, to accept Christ as their Savior. Many raised their hands and accepted Christ on Saturday afternoon.

Here is a neat story about a life that was forever changed this weekend. Some of my details might be a little fuzzy, but you will get the gist...

On Friday night, there were lots of people at the church for the viewing. The line to see Sara's body got backed up and the queue of people started to wrap around the outside of the church building. There was a football practice going on across the street and the long line of people got the attention of a guy named Mike. After the practice concluded, Mike walked over to the church to see what the crowd had gathered for. After asking some questions, Mike learned about Sara and somebody gave him the blog address. After reading the blog on Friday evening, Mike was back at the funeral on Saturday, as a complete stranger. Sara's story had struck a cord within Mike's heart and during the invitation at the end of the service, Mike chose to follow Christ. SARA, YOU CONTINUE TO REACH OTHERS AND CHANGE LIVES!

In a previous post, I was disappointed about Sara being unable to donate her heart because of the cancer and chemo. As I thought about this for the past few days, it became apparent that everyone that Sara has impacted has a small piece of her heart. She has been "donating her heart" for the past 29 years...and continues to do so.

I hope and pray that Chloe will develop a heart like her mother's. Chloe will forever have a reminder of her Mom with her "Heart Tattoo" birthmark on her right arm.

Heart Birthmark

It has become more apparent over the past week, that September 22, 2009 was Sara's time to go. As Chloe and I were driving back to San Antonio on Tuesday morning, I was doing lots of thinking. I started thinking about the timing of everything that has transpired over the past 8 months. The timing of us finding the lump in Sara's breast, the timing of Chloe's conception, the timing of the chemotherapy treatments, the timing of the first bleeding complications. Then I prayed and thanked the Lord for Chloe's premature birth. Think about it...she was not supposed to be born for another 3 weeks.

There is a time for everything, and a season for every activity under heaven: a time to be born and a time to die, a time to plant and a time to uproot, a time to kill and a time to heal, a time to tear down and a time to build, a time to weep and a time to laugh, a time to mourn and a time to dance, a time to scatter stones and a time to gather them, a time to embrace and a time to refrain, a time to search and a time to give up, a time to keep and a time to throw away, a time to mend, a time to be silent and a time to speak, a time to love and a time to hate, a time for war and a time for peace. --Ecclesiastes 3:1-8

Sara, on your birthday, we remember you and the multitude of happy memories we have with you. I can only offer you kind words on this day. Thank you for loving me unconditionally. Thank you for choosing me and giving me an incredible 5 years of marriage. Thank you for our baby girl. Know that I will do my best to raise our daughter in a way that would make you proud. I LOVE YOU!

Lord, thank you for knitting Sara's life together and for perfectly orchestrating her 10,584 days on Earth.

For you created my inmost being; you knit me together in my mother's womb. --Psalm 139:13

P.S. Happy Birthday Momma Sheryl (Sara's mom). I love you, too!

Grandpa Larry (my dad)

Funeral Details...

The visitation and funeral will be held at:

First Baptist Church - Deer Park
438 East 8th Street
Deer Park, TX 77536

Visitation will be on Friday, September 25 from 5:00pm - 8:00pm.

Sara's funeral service will be on Saturday, September 26 at 11:00am.

In lieu of flowers, please send donations to:

Sara Sullivan Memorial Fund

You can send donations via paypal at http://tinyurl.com/sarastrongmemorial

or

Write checks to: Sara Sullivan Memorial Fund

Randolph-Brooks FCU
PO Box 2097
Universal City, TX 78148

Also, one of Sara's dear friends will be compiling a book of "Sara Memories" for Chloe so that she can read about what an amazing woman her mother was.

You can send letters to Debbie Dunn at dunnz@aol.com or send handwritten letters to:

Debbie Dunn
500 Riders Trail
Austin, TX 78733

See you this weekend. God Bless.

Heaven Bound...

Sara's final test to check for blood flow to the brain was completed around 11:00am this morning. The results came back and there was no blood flow. Soon thereafter, the doctor declared Sara as brain dead.

After some discussions with the Organ Donation Team, Sara was only able to donate her eyes. Based on her cancer diagnosis and chemotherapy, her heart, lungs, kidneys, and liver were unable to be donated. Sara would have wanted to continue giving and I WANTED SOMEONE TO HAVE HER HEART!!!

After we had our time with Sara this afternoon, the doctors came in and removed the ventilator. The entire family was with Sara until her heart stopped beating.

The reality of the situation has yet to sink in, but Sara is now with Jesus and for this I am thankful...and at peace! I will miss my best friend and am sorry that Chloe will not be able to know her mother, but Sara's legacy will live on through our MANY happy memories with her. Chloe will know her mother through the impact Sara had on so many lives. She was an AMAZING WOMAN who touched the lives of everyone she came in contact with!

Thank you to those of you who have been praying for us. It is completely clear to me that the Lord was calling Sara home at this time. No matter what her diagnosis had been, it was her time to go. She delivered our miracle baby and we spent a few days at home as a family. I have never seen Sara happier, and I feel as though those few days were like heaven on earth.

Memorial services will be held this weekend in Houston. Once details finalize, they will be published on the blog.

Once again, THANK YOU FOR YOUR PRAYERS FOR OUR FAMILY.

I lift up my eyes to the hills - where does my help come from? My help comes from the Lord, the Maker of heaven and earth. --Psalm 121:1-2

Where we stand...

I will start out by telling you that the prognosis for Sara is looking VERY grave. I got a call from the ICU doctor this morning at 4:00am advising me of Sara's change in status. A little after midnight, Sara had a spike in her blood pressure, followed by a drastic drop in blood pressure. Drug intervention was required to raise her BP to a normal range. Soon thereafter, her body began ridding itself of all fluids (diabetes insipidus). The doctors explained that this is typically what happens when there is brain stem compression. They took Sara downstairs for another CT scan to look at changes in her brain. There was more brain swelling than before and more fluid was compressing her brain. The doctor asked me how far I lived from the hospital, and I knew things were not good. He told me I did not need to come in immediately, but I knew today was not going to bear good news.

Once I got to the hospital, the doctor told me that when they hooked Sara back up to the EEG machine, there was hardly any brain activity (indicative of impending brain death). They explained that she had experienced cerebral herniation (the brain stem is compressed into the base of the skull) apparently cutting off blood flow to her brain. Once her blood pressure had dropped, the doctors removed the sedatives and anti-seizure medicine to help keep her blood pressure up. The doctors decided that they want to do a final test in the morning to test for blood flow to her brain. If there is no blood flow, the doctor will declare "brain death" and we will move forward with the plan to process her organs for donation.

I still believe that God can perform an amazing miracle tonight and raise her from her apparent brain death. Please join our family in prayer for that.

I cannot believe that it has come to this point (nor can the doctors), but tonight before I left, I told Sara, "Chloe and I will be okay and I want you to go in peace." This was one of the most difficult sentences I've ever spoken, but it is the TRUTH!

I have much more to share, but the bed and the baby are calling. Please pray.

The latest...

The doctors are still working to pinpoint a diagnosis for Sara's condition. All of Sara's tests came back with good news yesterday. There were no clots in her extremities and no hole in her heart. The doctors are having a difficult time diagnosing Sara's condition because all of her tests appear to be normal. The symptoms were pointing to eclampsia, but they are not considering Sara's blood pressure to be excessive. The majority of the team of doctors working the case think she has "post-partum angiopathy." PRES, RPLS, and post-partum angiopathy are all very similar in that there is swelling/seeping of the blood vessels in the brain.

The radiologists seem to think that they have spotted a clot, which would point towards a stroke. This afternoon they are going to do an MRA. This is a test of the arteries going into the brain to look for a clot (done in the MRI machine). There were no clots in the veins, but they want to rule out clots completely.

After a long discussion with the lead doctor on the case, we discussed lots of "risk vs. reward" considerations with the tests. He said all of the tests they have done are "minimally invasive" and carry a small amount of risk (i.e. the rewards outweigh the risk). Once the tests begin to get risky, we have to decide on whether the risk is work it. For example, the neurologists think that she might have some excessive cranial pressure, so they want to drill into her skull and place a pressure transducer on her brain. This is extremely invasive and carries a large amount of risk. (I just got off the phone with the Neurosurgeon at Wilford Hall and he does not think that there is any benefit to placing the transducer in her brain).

The problem that Sara has is that none of her labs and blood work show a glaring problem. If some of her counts or numbers were completely out of bounds, it would be a simple problem to diagnose. All her tests have been right where they should be for a healthy person. I got a little frustrated with the doctors yesterday and I asked, "How long are you going to continue to run tests before starting treatment?" He told me he is reaching his "comfort level" and is ready to start treating the most likely case. The problem is that the treatment options for stroke vs. PRES are completely different and treating the wrong one could have devastating results.

The plan right now is to stop the sedatives tomorrow and wake her up. Everybody wants to see if she is able to respond and move all of her extremities. In her current sedated state, no harm is being done. The neurologists explained that her brain is currently on standby. The concern is that if she starts to have another seizure, there could be more damage to her brain. If she seizes, they will put her "back under" and let the brain rest for 48 hours and try to wake her up again.

I will update tomorrow regarding Sara's wake-up. Pray that there are no seizures and that there has been no permanent brain damage.

ICU Update

I left the hospital at 7:00pm last night to go home and see our baby and get some sleep (I was getting delirious).

I got a call from the ICU at 2:30am giving me an update. Sara had another seizure last night that was difficult to break. After that seizure, Sara was intubated to protect her airway in the event of subsequent seizures. She was also placed on heavy sedatives and anti-seizure meds to keep her comfortable and to prevent more seizures. This required them to put her on a ventilator. I had been getting my much needed sleep until that call.

It was difficult to see Sara this morning on all of her "life-support" equipment. We still believe that this is just a temporary state as they decide on a final diagnosis/treatment plan.

The tests that still remain to be done include a full body scan for any DVT (deep vein thrombosis). After that, they are going to do another scan of her heart. There is concern (among the docs) that a clot could have passed through a hole in her heart and ended up near her brain. I don't think this is a factor based on her clear echocardiogram a few weeks ago.

The OBs are still trying to rule out eclampsia as the cause of the seizures. Sara typically has very low blood pressure (100/50). When she was admitted, her blood pressure was 150/90. The docs are currently collecting urine to do a 24-hour screen for protein and other electrolytes which will allow them to confirm or rule-out eclampsia.

The Neurologists are leaning towards Sara having Posterior Reversible Encephalopothy Syndrome (PRES). Another discussion talked about Reversible Posterior Leukoencephalopothy Syndrome (RPLS). I'm not going to describe them here...you can google them if interested. Key words are REVERSIBLE. This is why I'm a little anxious about getting a diagnosis and treatment started. The anti-seizure and sedatives are keeping her blood pressure down which is needed to prevent future seizures.

I just had a discussion with one of her doctors about continuing to run different tests vs. getting treatement started. He assured me that they are treating her as they continue to search for an exact diagnosis. I was glad to hear that.

Most of the test results should be back by the end of today and hopefully we can get the correct treatment started soon.

Thank you to everyone for being so supportive during our latest trial. The outpouring of love and support is amazing.

Continue to pray for a correct/timely diagnosis for Sara's condition and healing for her mind and body.

The Storms are Raging...

Sara and I thought we had crossed the final hurdle when we brought Chloe home on Tuesday night. We were wrong. Last night, Sara started acting very confused and then started twitching. As I realized that something was wrong with her brain, I called 911. As the EMS were on the way, she started convulsing and ended up in a full blown seizure. Sara and I were taken to the nearest Emergency Room via ambulance and left Chloe with some of our good friends.

Sara continued to "seize" last night and they gave her lots of drugs to alleviate the head pain and relax the tremors. After a CT Scan and an MRI, the results were inconclusive. The doctors didn't think that it was a tumor and started leaning towards a stroke. We spent the night in the ER and ended up getting transferred to Wilford Hall this morning. The move could not have happened sooner.

The doctors are doing a full "work up" on her and at this point, they don't think she had a stroke and agree that it is not a tumor. There are still numerous other conditions to rule out before the docs can pinpoint an exact diagnosis or cause. We should know more tomorrow.

Our family came in from Houston and Austin and are taking good care of us.

At this point, Sara is in a semi-comatose state. Please pray for a COMPLETE RECOVERY and for Sara to come back home ASAP.

The blog will be updated as soon as we know more.