SurvivingInfidelity.com^®

Long night (see also my post in General titled living my worst nightmare...). During dinner, her nose started pouring blood and just wouldn't stop. For reasons that can't be mentioned in this forum, I was sorta stuck where I was. It took a solid 25 minutes to get it stopped. I'm sure the massive doses of ibuprofen don't help with bleeding. Anyhow, I talked to the neurosurgeon on call who said to bring her in if it happened again and didn't stop within 10 minutes so they could check her blood counts.

The oral dilaudid takes a little while to work, and she's used to (and quite liked... ) the IV dilaudid, so we're working on getting her pain meds dosed correctly so the pain stays under control. She's sleeping now, so I'm praying for an uneventful night. I'll wake her at 4am for more Motrin/Tylenol.

Now I'm just anxious for Thursday to arrive. As hard as it is for me to grasp a 20% recurrence rate and 10-15% mortality rate, I just cannot even imagine the news being even worse. And the reality is, the news usually IS worse. We are so blessed. Some people wonder "why did MY child have to be the one" and I tend to think along the opposite lines of "why does my child get to the one of the "lucky" ones with a good prognosis"? It's hard to make sense of much right now. It's like the world is upside down and inside out.

My thoughts and prayers are with you and your daughter. So glad that you were able to get her bleeding under control. Your Neuro sounds fabulous. The next few days will be tough waiting for your appointment. As others have said, be sure to take care of you. You are such a great mum, be kind to yourself too. Hugs (((N))

Hugs Nightowl

Keep the faith and know that you will find the strength you need for your DD. Momma's always do.

And when you need to vent please come here to do so.

We are all rooting for you and praying for you.

(((big hugs)))

(((nightowl and DD and children)))

Everything I have is crossed for you.

Hugs,

MOB xxx

Sending your hugs and prayers for a speedy recovery.

If someone could PM me the GFM link, I would appreciate it.

(((nightowl and DD)))

Sending your prayer and strength to get thru this time.

nightowl1975, just hold on. This is going to get better and you will both be so much closer for it. I think you're doing as well as anyone can possibly do. prayers for you both.

WheelsUp, I sent you a pm

Hang in there Nightowl, you're doing just great and every day you make it through is another day nearer Thursday...

I'm hoping for a great update then so I can pop a celebratory card in the mail

[This message edited by earthangel at 4:47 PM, October 23rd (Monday)]

Nightowl, I am so impressed with your control and dignity in the face of such abominable behavior.

I pray that your daughter will make a full recovery and will live a long happy life.

As I saw this thread, I have to say that my first thought was very uncharitable. Should, God forbid, any further crises arise, could you either not let XWH know until the outcome is known, or ban him from bringing OW.

I don't know if I would have had the grace you had under those circumstances.

Thank you for updating us nightowl. Prayers for strength, healing and pain relief going up. you've got this!! Big hugs for you and your family.

Continuing to think of you both.

Could someone please send me the gfm link, please?

My best wishes for you

First of all – as a "mom" – you ROCK! You are my hero. You are the mama bear that your daughter needs most right now! Good for you for not putting up with any lack of attention for her comfort level.

Also, I wanted to just add my own personal opinion about prognosis. I believe that paying close attention to the diagnosis of these brilliant doctors is very important. But leave it at that. Do not listen to the prognosis. Do not Google it. Do not think about it. It is important to educate yourself about the condition – not the prognosis. Put it out of your head. People tend to subconsciously "except" and "expect" what they learn about prognosis.

She ABSOLUTELY has 100% chance of recovery. And that's all that matters.

(I'm sure some disagree with me, and I am not badmouthing doctors in any way.) People tend to "believe" and set their mind to the prognosis percentages. Let that go. Let it go. See your child being 100% better. Visualize it and actually see it. See her as a 95-year-old great-grandmother at Thanksgiving with her family. Get her to see it as well. Pay no attention to any negative prognosis . JMHO

If you are a person of faith, now is the time. And if you happen not to be a person of faith – I have enough for both of us – and your daughter as well. You have to know how much all of us love you and love your daughter and have every confidence that you will get through this - as will she.

Thought is energy. That is a fact. So every positive thought gives that same positive energy into that precious body of hers. I believe this like I believe in God.

My every hope and prayer and good wish is for you and your child. All my love. 💞💞💞

[This message edited by WhatsRight at 2:16 AM, October 25th (Wednesday)]

So very very glad to hear about the low grade and the clean margins.

I also watched while my son cried through a brain MRI. I’ll never forget it. I saw the image of his brain on the monitor and turned and vomited.

My son has a genome sequence-based potential diagnosis of a genetic disorder that MAY OR MAY NOT ever affect him. We will know in the next 20 years. Maybe longer. Maybe tomorrow. At any moment he may or may not show symptoms. I spent the first year after this diagnosis hysterical, but needing to appear calm to him, watching every move he made.

The next year was a little better. The third year I sometime didnt even think about it. This fourth year it only occasionally crosses my mind.

Like leaving her sobbing in the MRI, like handing her off to have her head opened, like waiting fo the results of the biopsy - you’re already doing this. It isn’t a trip you can prepare for. Literally all you can do is the best you can do every second. Then you look back a week later, a month later, a year later and you’ll see that you’ve been “doing it” all along.

Let all your kids eat a bit too much junk and watch too much tv. Laugh together at stupid YouTube videos. Sleep when you should be cleaning. You will do this one day at a time because you simply have no choice.

And while you’re dealing with the 85-90%, doctors and researchers are making headway every single second. The medical advances happening now are mind boggling. Every day that your daughter lives, every single day, they’re getting better and better at dealing with any problems that might drop up for her later. I take a great great deal of comfort in that.

Sending my best to your whole family.

Praying for a speedy recovery.

((((Hugs to both of you))))

Sending positive mojo for your followup visit today and hope that you both can go home! What a relief that will be. Like others have said, accept the kind offers of friends to help while you and DD rest and recover. Give yourself permission to "slack off" on any "to do"s that aren't truly critical. Hug that sweet girl tight! Best to you.

Thinking of your little one and would love an update....

Just hoping that everything is on schedule and you will be headed home tomorrow.

Sending prayers and hugs......

We ventured out into the real world today. Her headache was pretty much non-existent. Woot woot!! We spent a couple of hours at the children's museum and had lunch and dinner out as well. It was a nice change from the dark, quiet hotel room. I'm so, so relieved she's feeling better.

Tomorrow, I'll get the final pathology report. It's strange how I go from feeling like a 10-15% mortality rate is completely terrifying to praying with everything I have that it's *just* a 10-15% mortality rate that we're dealing with. It won't be any less than that... I know that. But there's a chance it could be worse. And I've pretty much put that chance out of my mind because I can't go there and stay sane. Coping with the reality that this has forever altered her health and put her at a huge risk of having another brain tumor down the road is bad enough.

So. Praying with all I've got that the final pathology report confirms it's a low grade tumor with no residual tumor on the post op MRI. Wrapping my mind around that reality is more than I can imagine as it is.