Tuesday, September 29, 2009

What kind of fungus?

I understood that Adrienne had Candida but after talking with the infectious disease doctor today, they don't actually know what kind of fungus she has. It takes awhile to grow it out and it could take another day or two to get a final pathology. Best case: this is candida and she's on the right antifungal. Worst case: this is aspergillosis and this is very, very hard to treat.

The onc sat down to talk to me today about "where we're at." Of course, her prognosis isn't good and he's worried to give more chemo and possibly destroying her marrow. (BTW: White count is high now, HGB went up, and platelets are stable.) My feeling is, if we do nothing, she'll die. If we give chemo, there's a risk she'll die but there's also the possibility (albeit small) that she'll recover. So where's the risk? I was sort of caught off guard so I didn't go through my logic with him but I will tomorrow. I know that Adrienne wants to try everything and trusts Dr. O more than anyone. Like I keep saying over and over, it's not up to me or anyone to make a "final" decision for another person.

The other development is that the insurance company is pushing to move Adrienne to a long term care facility. Maybe "pushing" is too big a word. They're inquiring and this was expected since she got the trach. The docs have been clear that she's too unstable to move, especially with the fungal infection. I've done a little checking and there's a really nice (new) facility right near our house and they also have an ICU. This might actually be a good option for her. We still need to do more investigation but we're taking it a day at a time. Let's see what the cultures tell us and then we can decide the next steps.

17 comments:

Anonymous said...

Sending prayers as these very important decisions are made.

A Mom

Anonymous said...

You, Adrienne & your family are in my thoughts daily. I am so sorry that you are faced with these decisions.
Ever hopefull for Adrienne and you all.
Kelly (kittycatmom)

Skye said...

Nothing is "final" yet. You continue doing what you think is in Adrienne's best interest and what you believe she would want and things will find a way of working out. I'm sorry you have to be put in this position-the unfortunate side of knowing Adrienne better than anyone else. You have so much love and support and you will make the very best possible decisions based on what your daughter needs and what is available to you. My prayers continue to be with you.

Anonymous said...

Dear Alison,

It's not worth a plug nickel or two hoots, but I totally agree with your reasoning and find it extremely sound. I'll be sending prayers winging as you wait for the final culture results.

Love,

Lisa

Bonnie said...

Hugs, support, and more of my hopes and best wishes for a positive outcome. Adrienne is just too special of a person . . . something has got to give and something has got to work.

Veronica said...

You are facing these impossible questions with such dignity and level-headedness, Alison - your love for Adrienne shines through with every word.......Adrienne knows you are doing all you can for her and i beg to differ, but I suspect Adrienne trusts YOU more than anyone in the world, Dr O comes a very close second ;0)
Love and hugs as always to two of the most special ladies on this planet...............<3

cathyn said...

Oh Alison, I don't know what to say :(
I agree with you though in regards to trying the chemo, I would do the same. I think any mother/parent would try whatever they could for their child.
I'm thinking of you both always,

Cathy

Unknown said...

Sending you peace, strength and prayers . . . such a tough road to be on right now.

Karen, Clare's mom

mumtotwo said...

still praying for you all so very much.
God's peace.
Robin

katmm said...

Gosh Alison - this has been such a long road for you and Adrienne. I agree with your logic regarding chemo. Oncs are so tuned to evaluate and avoid the risk of bone marrow failure - they forget that for some there is another more certain risk. Oh I wish no one ever had to face and evaluate either of those risks.

Know we are thinking of you and wish there were anything we could do to make a few moments of your day easier or brighter.

Hugs,
Kathy

Heather said...

alison, i have no doubts that you will make the right decisions for adrienne. i'm sorry that you have to though.

it does really sound like adrienne is too unstable to be transferred to a long term care facility. the trach is so new anyway. plus the fungal infection. and the possibility of chemo in the near future. i hope the doctors can get the insurance company straight on what is best for adrienne.

love and prayers for you all.

laulausmamma said...

Each day brings a new dilemma or two...and more decisions to have to think about. Just can't imagine how you are staying as sane as you seem when you write your posts. Hope you are able to get some rest in between the chaos.

As always...sending our loving support and prayers as we all wait for the fungus results and see what decisions are made.

((HUGS))
Susan and Rich

Anonymous said...

Dear Alison, Adrienne is on my mind, thinking she is a strong girl, with the best support and (((love))) waiting to hear the meds are working and the fungus is mild!

(((Hugs)))
Gitte

Maggie May said...

I am new here and have read pages and pages of your entries, and Adrienne's, enough to fall in love with such a deeply loving, abiding, loyal and level family unit. You are an amazing mother. I am the mother of three and read with great respect and mother's love your carefully detailed entries about your beautiful, smart daughter's life.
I am praying for her and for you.
Love
Maggie

Anonymous said...

I hope that the current antibiotics do the trick and that you get good news today--you and Adrienne certain deserve it! You are in my thoughts and prayers--I continue to believe there is hope. Love, Janet

Anonymous said...

Alison,
Thinking of you both every day. Anxiously awaiting those lab results, I hope that the fungus is Candida and not apergillosis. The blood counts being up sounds like good news so I am not really understanding the onc's comment re bone marrow and agree with you that the greater risk maybe in not treating. So glad you have Dr. O to give a second opinion.
((HUGS))
Carol

ziva gartner said...

Dear Alison,

you do not know me, I am Seegal's Anselmo mother. My heart and prayers are with you at this difficult moment, but in your heart you know what has to be done for your daughter Adrienne. My wishes and prayer are that you will be able to continue living knowing that you did all you could do your baby and she knows that you love her.
Again my G-d be with you.

I am a mom that was there too but with g-d's will she made it.

Ziva