Saturday, December 27, 2008

From Mike: Day +32 (Day 26 in ICU)

One of the big reasons Dawn started this blog was to help others going through what she is. In that spirit, I'm going to ask each of you to help her accomplish that goal. You can help by giving blood and joining the bone marrow registry. The blood bank supply runs critically low this time of year as the number of volunteer donors declines because of the holidays. Even Dawn's doctors have mentioned that they've held back on some transfusions because the supply of her blood type is low and they want it to be there if the need becomes critical. Please donate blood and help someone just like Dawn. Visit http://www.givelife.org/ to find donation locations near you. Also Information about joining the bone marrow donor registry is found at http://www.marrow.org/, please share this information with a friend.

Update: 7:20am
I was sleeping in Dawn's room when the doctor woke me up at 4:30 this morning and said she was afraid Dawn was dying. They called her parents and brothers at home to come in. Late in the evening they switched her from a normal ventilator to a oscillatory ventilator. Instead of giving her long deep breaths like the other vent, this one gives her short breaths very quickly. Her vitals began to stabilize and blood gases were looking better for a while but then started to get worse, as low as 50% oxygen levels. Her liver enzymes also got much worse and her body temperature got down to 91 degrees. She's on a ventilator for the lungs, dialysis for the kidneys and she requires a multiple medicines to keep her blood pressure normal. As you can see there are multiple organs failing. At about 4:45 this morning they started giving her nitric oxide in her vent to help open up the blood vessels in the lungs. This seems to be helping as her most recent blood gases are much better. They said she has acute respiratory distress syndrome or ARDS.

The good news is that her body temperature has started to rise and her vitals are looking much better. Also ARDS can resolve itself if nothing else bad happens but she has a really long road ahead of her and she really can't get much worse than she is right now.

Update: 1pm
Dawn seems to be making some progress. Her recovery isn't going to be swift but each little step can be a mile in recovery and she has a long way to go. She's off the blood pressure medication and is holding good pressure. It's actually a little high right now but getting off the pressors is a big step. Her breathing is a little better, the blood gases are coming back ok and she's only getting 50% oxygen. That's still a bit high but she's been getting 100% oxygen all night which can become toxic.

Update: 6:45pm
I don't really have much to update which is probably a good thing. They just removed the crash cart from the room which is encouraging. Her blood gases continue to look good. She's made some pretty good progress in the last 12 hours, it certainly has been better than the previous 12 hours. Everyone is cautiously optimistic that she hit rock bottom last night and is now on a slow road to recovery. We used to measure her progress by days and weeks, right now it's minute by minute but today it seems each minute is better than the last. The overall plan is to continue to support her functions, protect her from infection and allow her body to rest and recover.

Update: 7:30pm
I forgot one thing, they stopped the defibrotide. It's unclear without a liver biopsy whether her liver issues are from VOD or something else. It's a study drug and there could be unknown side effects that are contributing to her ARDS. We all hope the VOD has resolved itself and the liver doctors have leaned that way from the beginning anyway. She remained on the defibrotide up until now because it's currently the only treatment available for VOD with any measure of success.

25 Comments:

Anonymous said...

Lifting you all up in prayer.

Diane (LALS forum)

Annie - Steven's mom said...

so many wishes, so many hopes heading your way.
love and light
Annie

Sinnat Productions said...

Mike - I will continue to lift Dawn, You and the Nelson Family up in prayer. May the Lord continue to to hold you all in his hands.
Tannis

Anonymous said...

Mike... We are all pulling for Dawn... There are entire crews, congregations & compounds across America thinking & praying for you guys....
Warm HUGS
-LB & Susie

Claudia Ingram said...

We pray for mercy, not knowing what that looks like to God right now. Regardless, we continue to pray...and love you all from a distance.

Claudia and Bob

dwain said...

My thoughts and hopes.

Anonymous said...

Just want you to know I'm with you in spirit. Dawn is always in my heart. My prayers are for Dawn to have relief from her suffering. She's a beautiful girl with a beautiful spirit and she deserves so much more.

Harriet

Anonymous said...

Mike,

Miracles happen. Keep the faith.
There are alot of prayers going up for Dawn and you right now.

Anonymous said...

Mike
Ever since early this morning we sat here wondering what we could write to ease what Dawn is going through and how it effects you. Know that our prayers continue and we wait for you or your Mom to keep us informed. Know also we are here for you when you need us.
Love
Grandpa Tony & Nancy

Anonymous said...

All of us CMLers on The Leukemia & Lymphoma Society's bulletin boards are praying for you. Dawn, you have been through so much and your spirit and courage are an inspiration to us all. Mike, Dawn's family and Mike's family - We can't begin to realize how hard this journey has been on you all. You are also in our thoughts and prayers.
Alexandra
New Rochelle, NY
dx CML 1/11/2007

Anonymous said...

Praying for you, Precious One, and for all of those surrounding you with their love, concern, and care. May God bless you and keep you!

Anonymous said...

Jesus said, "I am the resurrection and the life. He who believes in me will live, even though he dies; and whoever lives and believes in me will never die." Shortly after saying this Jesus raised Lazarus from the dead. NEVER give up NEVER lose faith and give the GLORY to GOD. PRAISE HIM IN THIS STORM.

Tara said...

I've been sitting here for some time wondering what I can say to make things better. I will continue to pray for Dawn, Mike, and the whole family every day. From the first blog till now, we can all see Dawn is a fighter and she is doing her best to stay with us even today. May the angels continue to watch over you and keep you safe.

-Tara

Maria G said...

my thoughts, prayers & love are with all of you, including the doctors & nurses. hang in there.
all my love,
maria

Anonymous said...

I came across this site while searching for info on leukemia. My 18 year old son was dx with T-cell ALL in July. He entered remission within days of starting treatment and so far has remained in remission.

Dawn's story has touched my heart and I will pray for her with all my sole.

Thanks for the info on the blood situation. My son has needed lots and lots of blood over the past several months and I will pass the info to everyone I know.

Anonymous said...

Dear ones,
If we can't put into words the pain we are feeling, how can we even imagine what your whole family has been going through? What about the unbelievable spirit of Dawn, this precious being who is such an inspiration to all of us??
Know that our heartfelt prayers hold the hope for Dawn to remain on the road to recovery.
May God keep her in HIS healing LIGHT.
Much aloha,
kashmir

hockeychic said...

sending good thoughts, healing thoughts and strength your way.

Anonymous said...

Dear Mike and Dawn, God watches over even the sparrow, makes the blind see, raises from the dead and comforts those who grieve and will help you as you struggle through this storm. So many prayers from so many people will be helpful to the team that care for her and we who wait. You have a great family who loves you with all their being. Thank you Mike for caring for my grand daughter, i apprecciate it more than i can say... Grandma Green

Maria G said...

small steps forward....keep fighting dawn. you are truly a hero, your strength both inspires & amazes me. continuing to send love & healing thoughts & prayers.
all my love,
maria

Anonymous said...

Mike- You must be so exhausted! Don't forget to take care of yourself, too. You need to stay strong so you can continue to support Dawn! You've been so incredible through all of this. I continue to pray for Dawn and send healing light and love.

Harriet

bigD said...

For Dawn, Mike & family,

One day I found a blog written by a soldier's mom. Her son Matthew had been very critically injured in Iraq and he was fighting for his life at Brooke Army Medical Center. My heart went out to both of them and I found this prayer and sent it to Mrs. W. I hope it brings you some small measure of comfort. Matthew had a rough journey, much like Dawn is experiencing right now...but, he made it through. It was really a miracle of love and faith that pulled him through. My heart is with all of you on this day. I will continue to pray for Dawn to find the strength to begin each day anew. Minute by minute, hour by hour, baby step by baby step, moment by moment, may God grant her inner peace and bring her out of this darkness so that she may once again shine her bright light into this world.

"I have no other helper than you, no other father, I pray to you.
Only you can help me. My present misery is too great.
Despair grips me, and I am at my wit’s end.
Oh Lord, Creator, Ruler of the World, Father.
I thank you that you have brought me through.

How strong the pain was—but, you were stronger.
How deep the fall was—but, you were even deeper.
How dark the night was—but, you were the noonday sun in it.
You are our father, our mother, our brother, and our friend."

~African Prayer

Steve Vandergriff said...

We continue to pray for Dawn's total recovery! Mike, whatever y'all need...

-Steve

Kathy - Eric's Mom said...

Mike and Dawn,
Came across your blog and am thinking all positive thoughts for you. Your strength is awe-inspiring.

Kathy
Mom to Eric (21 and at day +23 of his Allo)

Merideth said...

Dawn and Mike-- what to say? I just want you to know there are SO many people pulling for y'all right now that are sending every bit of love, positive vibes, and healing energy your way. Y'all occupy my thoughts every single minute of every single day. all the love and healing in the world ♥

Merideth

Diana said...

Oh...the ups and downs. I doubt you know me, but I spent a few months in MUSC on 5WEST in a few doors down from Dawn with my boyfriend, Jeremy. Jeremy went home with hospice a few days after Dawn was admitted. I remember seeing the sign to check out the blog. I checked it out right away, but lost sight of things, when Jeremy started going downhill. We lost him 3 weeks ago today. He had the same mutation that Dawn has. I just want you to know that you are ALL in my prayers, especially Dawn! Prayer is the main answer, adn I pray that things will turn out different for her and she will live that long healthy life she deserves. Please tell Dawn to never give up, and please none of you give up on her, not even for a second! You have so many people praying and pulling for you. And I will pray with everything that I have in me, that Dawn will fight this nasty thing and Kick Cancer's Butt! Keep Faith, The Lord is with you! - God Bless you all!
Diana Bert