Yet another bad news update (baby is okay!!!) « Back to Group Discussions

[JynxGirl]

The people on my Facebook page already know this, but it's taken me almost two weeks to be able to come and post this here. Probably because I am so lost since this happened, I'm not sure how to put it into words anymore, or because I'm really not sure what comes next.

On the 2nd of March, I was diagnosed with a meningioma. It's a type of brain tumor that is in the my right occipital lobe. It's been affecting my vision, and we think it may have a lot to do with my temper issues lately as well. 

I'm still waiting for news from the surgeon, but from what I understand, I will be having a craniotomy sometime in the very near future. I'm working on making a list of places for DH to update while I'm in hospital, and this board will be on that list. 

Right now, I'm not really sure what I'm feeling or how we're going to get through this. What I do know is that I am terrified of what will happen to my nursing relationship with Patrick, our bond (he's a little attached to me...) and how my family is going to get through yet another massive crisis. 

I'll do my best to answer questions people might have, but I'm still kind of learning all of this myself. 

[SaguaroMoon]

Jynx -

I saw this on FB, but I wasn't sure what to say yet there; somehow I feel more comfortable responding here.

I am so sorry you are going through this. I think everyone has different ways of coping with this kind of news. I can only share what I think might help me if I were the one dealing with this.

This is, of course, terrifying, because you have no control in so many ways. You have no control over what's going on in your body, and you have no control over the immediate outcome of the surgery.

However, there are other things you may be able to control. Obviously, you won't be able to nurse Patrick during or right after the surgery, so start pumping now. Lots. As far as his attachment to you, is there any way he can be in the hospital room with you immediately prior to surgery and immediately after you wake up? As far as your milk production, could Anthony, or a trusted friend, pump you (and dump the milk) if necessary right after surgery?

Are there friends, family members, fellow parents who might be able to take "shifts" with Patrick so that he can be there with you as much as possible (assuming that Anthony can't take that much time at work?). Any people who might be able to help with Alena?

Maybe you could start putting together a list of anyone & everyone who can help your family in any way; they don't have to even be super close friends, just people that you know and trust. Maybe even break that list down into the ways that each person could potentially help (these people could help with Alena, these people could bring Patrick to me, these people could cook dinners for my family, these people could deal with business contacts, etc.).  Tell everyone you know about this, as soon as you feel capable, and when they say, "If there's anything I can do....", take them up on it.

Crises such as these seem to have a way of bringing out the best in acquaintances, especially fellow parents. We've never met, but I can honestly say that if I lived anywhere near you, I would offer to help in whatever way I could in a heartbeat (and if there's some way I could help long distance, let me know!); I'm sure there are lots of other people around you that will feel the same.
 

[forestmushroom]

sending hugs Jynx! you are in my thoughts and prayers.
 

[Kamiro]

Oh Jynx....Jenn....friend...

I am really just heart broken for you to hear this! So many unknowns....if there is something I can tell you is that from over here ---  this person here on the web thinks that you are a woman of utmost grace and a fighter. Both of those things stack the odds in all of your favor that you will be victorious over this. You have a purpose in this life and I will pray for you every day that you can do this with continued strength. That is the only thing I can really do, and I hope that comforts you.

I don't have a facebook, so please do have us updated here.

We love you and we are here for you (even if there is a bit of a delay in answering)...

[cristeen]

Jynx, I am so sorry to hear this.  If there is anything we can do to help support you through this from afar, please let us know. 

[JynxGirl]

Thanks everyone. I think just knowing I have somewhere to come and talk about my mommy fears surrounding this is helpful!! Because where else can I say things like "I am worried my mother in law will bleach my cloth diapers!!!" and not get laughed at? :P 

We got word from the surgeon and I go visit him on the 24th of April. This is both good and bad. It's good because it means I have time to pump more milk for Patrick and prepare myself for surgery. It's bad because it means my surgery won't be until at least May, and I want to be there for Patrick's birthday!!!

 We're still just waiting for more information.

[rozziemama]

Jynx - I'm so sorry. Thinking of you and as all have already said - I will reiterate - please let me/us know if there is any virtual/long distance support you need.

[maryamrose]

I just saw this - I'm so sorry Jennifer :( I hope you're getting the best care possible, and please let us know if we can help in any way. I can't imagine how scary this must be for you. Hugs, mama.

[Astraia]

Sorry I missed this- I don't check other threads often I just reply to the one that shows up in my email occasionally :)

I saw on FB as well, and I'm so sorry you're having to go through this. I don't think I have a lot to offer either, and I don't know how long a separation it will be from Patrick while you recover or how long nursing will be affected. Saguro has some good advice on pumping, and on storing milk now while you can. I would say don't worry too too much about separation and Patrick forgetting his connection to you. In some cases, forced separation can increase that need for connection. I assume he'll be visiting you if you're in the hospital for awhile? He can probably nurse then? As long as he gets in some good snuggle time every day, even if it's short, will keep the connection.

Bleaching diapers- haha. Just turn into my Mother In Law, and cover the house in post-it notes. Notes on how to wash diapers. Notes on the bleach bottle "not for diapers, it damages the fibers!"

Hope you can be there for Patrick's birthday! Missing his first would be a serious tear-jerker.

 

[JynxGirl]

At this point, we're planning to ask the doc to wait until AFTER his birthday so I can be there. I'm sure he'll understand. (I hope he will!!!)

Thankfully I've gotten into a great routine for pumping and am putting away about 3 oz a day. Which makes me feel better. One day I'll post a picture of my blue milk. It's bizarre and we have NO idea why I make blue milk, but it makes my freezer look like an easter basket!

For now, we're just waiting, and it's starting to drive us all a little nuts.

[SaguaroMoon]

That's great that you're able to pump so much - sounds like Patrick will be very well supplied during the surgery and recovery period!
 

[MLog]

Jynx, I am so sorry about this latest challenge for you and your family. You're in our thoughts and prayers. Hopefully you'll have a speedy and thorough recovery.

We dealt with a cancer battle in our family the year we all got pregnant with our babes. Here is my advice based on that experience fwiw. Consider creating a caring bridge page or something similar. I know you said you were going to give your dh a list of places to update, but that may get overwhelming for him. Having one place for updating and then providing info to everyone on how to get access might be easier.

There are several different online sites where you can set up for people to bring your family meals. I would look into that or see if one of your friends or family members will coordinate something like that for you. You may not think it's necessary but gives you and your dh one less thing to worry about. And after a long day at the hospital it is a blessing to feel provided for.

Like saguaro said, these types of crises do bring out the best in people and they will truly want to help. If there is anything we can do from afar let us know.

Most of all, prioritize what is truly important to you and focus on that and let the rest go.

[Sky]

thinking of you! 

[JynxGirl]

(posted from facebook) 

We are finally home. It has been a really long, semi-frustrating day. 

Here's the entire breakdown of my day. I promise to try to be brief but informative, but there's a lot here.

-Saw the neurosurgeon. He's an amazing guy.  He gave us three options, wait and see if it grows, traditional surgery or the GammaKnife procedure. The option was in my hands, and I had time because there is a lengthy waitlist for surgery and a decent one for GammaKnife (November bookings for surgery, three months-ish for GammaKnife.)

- My tumor is resting on a major vein in the back of my brain. This makes surgery more risky, and left me leaning towards the GammaKnife.

- I was sent to do a visual fields test which is kind of fun to do, and then sent back up to see the neuro opthamologist.

This is where things get fucked up and I kind of fell apart.

-Not only is my tumor pressing on the anterior supersaggital artery, it's also been applying pressure to my optic nerve. The pressure in my left eye is such that there is a risk I will lose my eye due to a rupture. 

-GammaKnife or waiting are no longer options. Surgery will not be happening in November. 

-Monday I am going back to St. Mike's hospital for another visual fields test and more checking of my eye pressure as well as a special CT scan, which I believe they called a V-CT. They're going to try a gauge how close to this vein my tumor is and if it will be at all possible to remove it. 

-Surgery is going to be booked as fast as possible. Weeks, if not days after the CT. I'm already waiting on pre-surgical appointments to make sure I'm healthy enough for surgery and to bank my own blood in case I need a transfusion. (I'm pumping milk AND blood!!)

That's about all I managed to hear before my mind shut down. I kind of went into a state of shock, and just needed to get the hell home. CT wasn't calling the receptionist back, the kids were getting miserable and I just wanted to come home. It has been a really, really, really long day.

[forestmushroom]

Jynx! can you PM me your Facebook?

((HUGS)) sending you huge hugs. I imagine being rushed into surgery is scary, especially without the technology that you are hoping for... All I can offer is my support and prayers!

Deep breaths, and bank that blood and milk....

[JynxGirl]

http://www/facebook.com/JynxGirl is me and https://www.facebook.com/HectorTheMexicanBoxer is the page we made for my updates. :) (Look for Jennifer Dharmasurya)

[forestmushroom]

Originally Posted by JynxGirl 

http://www/facebook.com/JynxGirl is me and https://www.facebook.com/HectorTheMexicanBoxer is the page we made for my updates. :) (Look for Jennifer Dharmasurya)

thanks! I just sent you a friend request :D

[cristeen]

I sent you a friend request, too.