Saturday, August 30, 2008

Two-fold downer

Can I just post a bunch of cuss words and be done with it? I've been avoiding this post... but it's got to be done. It's a two-fold downer so continue reading at your own risk.

Jessica's MRI CT scan showed narrowing of main blood vessels leading off the aorta to her gut. It is Ischemic and there's nothing they can do about it. Try to treat the symptoms. Good-bye.

At least that's how the phone conversation I was having with the GI nurse was going. *ahem* Excuse me? Do I offer her more morphine? What about the conversation I had with Dr. G about how much time we have? He offered to call Dr. V (Jessica's new pediatric cardiologist) and discuss it. I wanted to talk to him about whether it is time to put her back into hospice. "I'll remind Dr. G about your conversation and find out when he wants to see Jessica back in his office."

Bugger. Not what I wanted to hear... but it was what I expected. So I told Jessica that I had good news and bad news: She asked, "How can it be BOTH?" LOL I guess she's never heard that expression before. I told her that the good news was that she didn't have cancer. She's been so worried about cancer... her cousin Marcus has it, our next-door neighbor has it (throughout her whole belly!) and another cousin was just treated for cervical cancer... so she has cancer in her life and was so scared that she was going to have it too. So *whew!* no cancer! Then I said that the bad news was that she isn't getting enough blood to her gut and she cut me off and asked, "Am I going to die?!" I took a deep breath and said, "Well, Jessica, it's like with your heart. There's nothing more that they can do to fix it but we can give you morphine and try to help you feel better." So then we talked about a few things that help her tummy feel better like eating popcicles, jello and other soft things. (Oh crud! That reminds me that I totally forgot to put Jello on my list so I didn't get it at the store! ugh!)

Jessica is now telling everyone that her CT scan was clear. haha... sure... it was clear (as in devoid) of cancer... and unfortunately it's clear (devoid) of blood too! But hey, if believing that her CT scan was clear and that's good news... then I'm not going to burst her bubble. If that's what she needs to tell herself to get through the day then woo-hoo! I'll celebrate the good news with her.

So I've been looking up Ischemia of the bowels and everything leads to the fact that if it's not fixed then she will develop a blockage. Typical symptoms are throwing up, lack of energy, extreme pain.... all the symptoms that she had 2 weeks ago. I HATE THIS! I don't want her to have to go through this! So anyway, I'm starting a list of questions that I have for the doctors... such as... what the heck do I do if when it happens again and doesn't resolve it's self? Should I have some anti-nausea drugs on hand or let her throw up until she's severely dehydrated? The poor kid can hardly eat anything and has lost 12 lbs in just the last few months. She will want something and I'll fix it for her only to have her take two bites and then say, "My tummy says no." Do I watch her slowly starve? She really shouldn't lose any more but at the rate she is eating (few bites here and there), she is bound to continue to lose weight. Last night I made tacos and she ate several of them! I was tempted to take a pictures of her actually eating! BUT... she's been up all night now and still has a tummy ache. I'm supposed to go to church later this afternoon but I just don't know if I'll be up to it now. It's been a long night.

OK, I told you that this post was two-fold:
Marcus is having more problems. He is dizzy all the time and his eyesight is blurry. He can't even watch tv or play his video games. He has to use a walker to get around the house and has to be in a wheelchair to go out anywhere. Just 3 weeks ago he was in band camp for the marching band and now he's in a wheelchair and can't see well. He is getting quite swollen from the steroids too. Marcus had a CT scan on Wednesday (the same day Jessica did). They were looking to see if he is developing fluid on his brain. Nope. The biggest tumor is in the back of his head and it is putting pressure on the area that controls the eyesight. He gets his 2nd dose of the new chemo on Wednesday. Let's pray that this chemo will shrink the tumors so he can at least spend some time doing things that he enjoys. He can't go to school so he is at home... staring at the ceiling most of the time. But... my mom flew to UT and is staying with them to help out. She said that she has spent some time with Marcus and that he does come out of his bedroom and spends time with the family. I talked to my sister last night and she said that he doesn't complain. He doesn't really say much but he doesn't complain. He has gone out with his mom and grandma to the grocery store and has been out to a couple of other places so at least he's willing to go out and do some things.

There's a lot to be learned from these two cousins, Marcus and Jessica. I'm so impressed with Marcus's courage and strength. I sure would be upset if I couldn't see and do any of the usual things I enjoyed doing. This should be Marcus's senior year at school. He was really looking forward to it but isn't complaining. Some people would be too shy to go out in a wheelchair, especially being very swollen up from the steroids - but not Marcus. He saw a few kids from school at the grocery store and talked to them. He is awesome. And Jessica... what can I say about her? She does complain - but she sure has a lot of reasons to! But she is determined to do the fun things she wants to do. She will be laying on my bed, telling me how much she hurts but will laugh when I tickle her feet. She will play the Wii and other games, watch her favorite tv shows and trace her pictures. She loves telling everyone about Pokemon and has a wall covered in pictures of Pokemon that she has traced, colored, cut out and taped onto the wall. (good thing it has wallpaper that we hate so we don't mind her ruining it. haha!) When I'm in pain all I want to do is go to bed and hide. Not Jess. She will still do what she loves to do and will try to be happy while she's at it.

I truly appreciate all the messages of support posted here, emails and phone calls that I receive of hope, comfort and support. There are so many times that I just think: I'm so tired. I've been doing this for 20 years. Jessica is really demanding more and more of my attention - even when she doesn't really need it. For example: I'm barely headed to bed at almost 8:00am because I've been up all night with her. But I realize that this is what God has called me to do and I will continue to do my best. I love Miss Jess and I love my sons too. I'm trying to show them in different ways how much I care about them. I'm so proud of my sons and hope for the best for them. There's so many things I wish I could do with them right now but I can't. I know there's a purpose for all this and only HE knows all the blessings that are in store. I just need to keep up the faith.

I almost left out Karl - my wonderful HH (handsome husband). Although he does find other funny things that HH can stand for: hefty husband, hungry husband, hunk-uv-a-husband LOL!


Awesome Mom said...

Oh Nancy this stinks so much. I wish I could be there to give you a nice big hug.

Posh Totty said...

Thinking of you all Xxx