Monday, January 5, 2009

From Mike: Day +41 (Day 35 in ICU)

Dawn's blasts went up again last night. They were as high as 23% this morning and today they're down to 10%. Dr. Stuart hasn't rounded yet so I haven't heard his take on this. They sent off the FISH this morning and hope to have a 24 hour turn around. If it turns out to be positive for leukemia, there really isn't any treatment that can be done in her current state. She's so fragile right now and on the edge of stability. There will be a discussion about whether to continue life support if the test results are positive.

They're preparing Dawn for a trip down to IR to get the liver biopsy and her hickman line removed and replaced, which could possibly be infected. She needs more blood and platelets. Her blood pressure is pretty low right now so they may start her on some pressors before making the trip. They don't want her to code during the trip, especially in an elevator. There was some discussion about whether to perform the tests today or wait until the results of the FISH. We've been pushing hard to get the tests done while we have a window of opportunity. Anything can change in the next 24-48 hours and maybe she'll need to get back on the oscillator vent and doing the procedures won't be an option. Plus the FISH could take more than 24 hours. I think we need to proceed as "normal" until we know what's going on with the blasts. Dawn only gets one shot at this and having a line with an infection in her body an additional 24-48 hours could make a big difference. We have a lot of battles to fight and we need to do what we can when we can. Her bilirubin is down today to 26. Hopefully we're seeing a trend downward.

Her breathing has been doing ok. Her lungs are still badly damaged so the blood gases aren't going to be excellent, but they're ok. It's hard to keep everything balanced. Her blood pH is high so they need her to hold on to more CO2, which helps lower blood acidity. To do that they lower her respiratory rate which in turn lowers the O2 levels. Dialysis also affects the blood acidity so they can make some changes there, but you also have to keep the fluid in the blood balanced. Too little or too much fluid can affect the heart which seems pretty sensitive lately. These kinds of adjustments to keep things stable and balanced are on going.

Update: 8pm
Dawn just got back from IR. They did the liver biopsy and they replaced the hickman with a PICC in her left arm. They're about to replace the line for dialysis which will be done at the bedside in her room. Her vitals have been stable, blood pressure holding well and her sinus rhythm (heart rhythm) has been normal. Dawn is still highly sedated, she did open her eyes a little bit today and seemed to look around the room. I'm not sure if she recognized any of us. Tomorrow morning we should get the results back from the FISH.

21 Comments:

Tara said...

Constantly in my prayers and thoughts. Hopefully this blast thing is just a fluke. I'm praying for you, Mike, Dawn, her family, and her doctors in this difficult time.

-Tara

Anonymous said...

May God bless Dawn and you, the caretakers, too! I am praying for you all halfway across the country!Thank you for blogging and reminding us all what a serious disease CML is. Please continue the reminders to donate blood, sign up for the bone marrow registry, and support fundraising efforts to find a cure for CML. May God give you and Dawn's doctors wisdom as you make decisions for her care.

Sending love and prayers from the Southwest

belfez said...

Hi there,
Despite all these problems, Dawn is still hanging in there,fighting away. I watch progress here,everyday, from Belfast,Northern Ireland.
I send only good thoughts.
Faye (another CML-er)

Maria G said...

Still thinking about you guys all the time & sending lots of love and healing thought. Dawn is the toughest girl I've ever encountered, and I'm praying that all of this all get resolved quickly & painlessly for everyone. Know that you guys are always on my mind...
lost of love,
maria

Kashmir said...

Praying to GOD that Dawn WILL be healed. It is all in HIS hands. There are so many lessons for all of us through Dawn, on so many levels. The love and compassion bringing together friends of friends, friends of their families - on and on- the chain of love is spreading , forming a healing circle of prayers from all paths.

Kashmir said...

Praying to GOD that Dawn WILL be healed. It is all in HIS hands. There are so many lessons for all of us through Dawn, on so many levels. The love and compassion bringing together friends of friends, friends of their families - on and on- the chain of love is spreading , forming a healing circle of prayers from all paths.

Anonymous said...

Praying for the best and sending you all the positive energy that I can each day.
((hugs))
~K

Nancy said...

I'm from the cml board. My name is Nancy. I also have cml. You are in my prayers. I hope you don't mind if I put you on our prayer chain at my church. May God send you peace during this difficult time.

Jessica said...

Dawn and her family, you guys are contantly in my thoughts, I hope she gets better. she's a tough girl. I pray for you all.
I love you guys.

~Jessica

Matt said...

We think about you guys and all you're going through every day, sending positive thoughts and energy.

They say it's "always darkest before the dawn". May the sunshine of Dawn come soon.

Matt & Wendy

Anonymous said...

Mike
Waiting by the computer to find out what Dr. Stuart had to say about the blast cells, and all the other things going on up there. I know it is hectic with everything going on and understand the pressure there must be on everyone. We, on the side lines, sit and wait, pray that the next post will be with more positive results.
With Love and concern
Grandpa Tony & Nancy

Anonymous said...

I am a fellow CML-er and I have been following your struggle. I lift you, Mike and your family up in prayer and pray that things will quickly take a good turn. You are such a fighter Dawn and you have my utmost respect...
your sister in CML

hockeychic said...

Very concerned. Sending healing thoughts and strength to you and Dawn every day.

kris gruca said...

Thinking about you everyday and praying for you Dawn.

-kris

jectac said...

Sending positive thoughts and prayers your way.

Tracy Christner

Anonymous said...

Hi Mike and Dawn, what we need is a big miracle now, her sweet body is so tired,He heals every day and still does miracles.WE in Columbus are praying for just that. May He keep his loving arms around all of you there with her. We love her so much.,. Grandma Green

Felicia Murray said...

Mike,
I'm praying for Dawn and her team. You all are such wonderful caregivers; I pray your strength and peace in the Lord and I pray for His wisdom for Dawn's doctors and nurses while she is healing.

Felicia

Tara said...

I will pray that the FISH test comes out perfect, just like before.

_tara

Maria G @ Sea said...

praying for a clean fish result tomorrow, & hoping that the liver biopsy can guide the doctors to help Dawn through her recovery. you all continue to be in my thoughts at all times.
all my love,
maria

Anonymous said...

dawn really needs a break from all this. i'm praying that her FISH test will come out negative of leukemia.

thanks mike for all your updates. we really care for both of you.

nora

Anonymous said...

I am praying and expect clean and clear results tom morning! And we can begin to win this battle and get her home!