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!

Tuesday, August 19, 2008

Heartbreaking news about Marcus - please keep praying!

Here is what my sister, Karen, wrote on Marcus's carepage:

"We arrived at Hawaii and Marcus woke up sick the next day. We ended up taking him to the ER on Tuesday (2nd day), spent the day doing CT'scan MRI's. They found another tumor in the back of his head. They put him on steroids and he did feel well enough to go to Pearl Harbor the next day for a few hours and went on his helicopter tour. We got him out in the water on the beach for one night and then spent a little time by the pool, out in the fresh air for a while.

After landing Sunday morning from our flight, he sat down and all of a sudden he got an excruciating headache. It was so bad that we took him immediately to Primary Children's where he was admitted. It took hours to get the pain to go away. They did another MRI and found that there are many little spots around the brain of tumor. Surgery is not an option, but we are going to start him on chemo, hopefully this week, that is a new medicine called Avistin. It has proven in some cases to stabilize the tumor and even shrink it in some cases. We are hoping this will at least buy us a little more time.

Thanks so much for your thoughts and prayers!"

John, Marcus's dad, has been traveling back and forth from the hospital to home (2 hour drive each way) and Karen has been at the hospital this whole time.... she hasn't even been home since leaving to go to Hawaii. I haven't been able to talk to Karen myself since her cell phone went dead but my Mom has been in communication with her and then of course she's been letting everyone in our family know what is going on. Here is a portion of an email I received this morning from my mom:

"Just a late update on Marcus, Karen called me last night right before her cell phone went dead. For those of you who tried to call yesterday, they were with Drs. all afternoon and they even did the spinal tap yesterday. Dr. Bergers is back and really covering every detail and taking care of business. They went down and saw all the pictures of MRI, recent and 3 weeks ago.. It's unreal how much and how fast it's all going. 3 wks. ago, there was not really anything there and now it's all over the place. The clusters of cancer are inside the brain growing and in the lining of the brain too. Just in the last year, since Marcus had the first tumor, they have new chemo that will shrink tumors and stop growth of them too. They don't know how much time that will buy, but it will be quality time. There are few side effects of the chemo. They will wait until they finish the chemo and then maybe clean up spots with radiation, depending on situation. They don't want to do full brain radiation because he had so much on the front last time. He's feeling much better, Karen and Marcus are still in hospital and don't know when they'll go home. The pain with this, has been lots worse than with the first one, but it's pretty much gone now. He's been cooperating and doing really well, his balance is better. They will start the chemo soon, before he goes home. If they do nothing, he wouldn't last even a month. He wants to do chemo and whatever they want to do. John went home with the boys last night and will come and bring Karen relief. They all are sounding better on phone and in good spirits. We appreciate all your prayers in their behalf, we know that Marcus' mission here isn't finished yet and that he will recoup and be OK for awhile, that's in God's hands. We love you all!"

Of course we have all been devastated that the situation is so much worse than we first thought. My mom called me Sunday afternoon to let me know that Marcus had to be rushed to the hospital and that he was in ICU. She also told me about the many clusters of tumors and that the neuro surgeon said that there was nothing he could do. They hadn't had a chance to talk to the oncologist yet so we were thinking that there were probably no options available. I couldn't sleep all night and I couldn't call my sister because she couldn't use her cell phone in ICU - and I knew how incredibly tired she must have been and wanted to make sure she was able to spend some time with Marcus.

Last night I told my kids about Marcus having more than one tumor. I had told them that they had found one while he was in Hawaii but wanted to wait until I knew whether Marcus had any treatment options before telling my children about the rest of the tumors. Jessica asked me straight out if Marcus could die from this. I had to tell her yes. BUT he could still have a lot of time left. I told her that she was a rule-breaker. She looked at me like, "WHAT?!" LOL I told her that she broke all the rules because she should have died years ago and look at her! She said something like, "Yeah! I'm still alive!" I told her that Marcus can be a rule breaker too. Jess said "Donna can be a rule breaker!" (Donna is our next-door neighbor who is also battling cancer). Brandon spoke up about the fact that when we die we go HOME. We had a discussion about where we go after we die and how loved ones will be there to greet us. It will be a joyful reunion and no pain of any kind. Jessica is very afraid of death so we try to discuss it whenever we have an opportunity. Jess has had separation anxiety ever since she was a baby. 4 years ago when she started having lung bleeds she became even more anxious about being away from me than ever before. I believe that is one reason why she fights so hard to hang on during those very painful times. Of course she loves life and loves being with family and friends.

Quick update on Jessica: She was finally able to eat a little bit last night! She asked for EEGGEEs so Karl bought her a 12" sub. It took Jess a few hours (I would cut a small pieces for her) but she ate 1/2 of it last night! I kept teasing her that I needed to take a picture because I was so surprised that she was actually eating! I still have the other half of the sandwich in the fridge for today so hopefully she will be able to eat it too. I left a message for her GI doctor yesterday - he and his nurse were out of the office all day, but the secretary assured me that she would give them the message today. Jess was still in a lot of pain all day and couldn't even eat much Jell-0.... but at least she isn't throwing up and has felt up to playing the Wii and drawing and writing her stories. It's so good to see her smile again.

Monday, August 18, 2008

Some good news!

Good news! Ravyn got her driver's license! YAY! We are so proud of her.

Way to go, Ravyn! We Love You!

Prayer request for Miss Jess

Oh goodness, where to begin? Jessica has been having tummy problems since.... forever + a day, but lately, like the last week and a half, she has had more and more pain. This girl is on quite a few medications for her tummy pain and sees the GI doctor regularly. I just spoke to the GI nurse two weeks ago and we agreed to continue one of the meds (that is only supposed to be used occasionally) since Jess is still having trouble. Well, on Friday Jess came to my bedroom, flopped herself onto my bed and said her tummy hurt extremely bad. Karl and I have started giving her morphine when her pain gets this bad so we gave her some and within 20 minutes she was throwing up. All afternoon she was weak and was throwing up. Her primary care doctor had left for the weekend so I called the Peds cardiologist to prescribe an anti-nausea medication. Our PC has retired (*sob!*) and her new one wasn't available so I got to talk to a new PC. He asked me what Jessica's heart condition is and her age. I briefly explained it to him he said, "wow, you have done a really good job with her!" Anyway, I was so glad he called it in! It took quite awhile to kick in and the next day Jessica still felt like she was going to throw up... she didn't though and was able to start taking in some fluids. Today her tummy is still very upset and anything "solid" makes her want to throw up. She is getting sick of Jell-O, soda and popcicles. Does anyone have any ideas as to what would help settle her stomach?

Jessica has lost some weight lately and I think it's because she is having a hard time finding anything to eat - anything that her tummy can handle. I'm going to call the GI doctor again tomorrow but I'm really worried that there's nothing that can be done. Right now I feel that she is battling a virus and of course it takes her body longer because of how weak she already is, but she has been having a lot of pain even before this virus hit. My friend, who is a cardiac nurse, told me that with Jessica's low cardiac out-put then of course she will be having more stomach pain since it isn't getting the blood flow that it needs. In fact, she told me that she is going into multi-organ failure. We discussed how almost every bodily function of Jessica's requires medications to help it along. I knew this would happen. I knew it was happening. And it could be this way for a long time yet. It's so hard to see her in so much pain - every single day. She still tries to remain chipper but it is hard on her too. Please pray for her to be relieved of her horrible pains and is able to eat something. Pray for strength for Karl, our sons and I as we move through more difficult times ahead.

Update on Marcus

First of all, thank you to all those who have been praying for Marcus and his family. Marcus was diagnosed with a 2nd brain tumor while on his Make A Wish trip to Hawaii this last week. After receiving some steroids in the ER in Hawaii on Tuesday, he was able to go on his tour of Pearl Harbor the next day like he wanted to. That was the main part of his wish and he was able to go! yay! He and his dad were able to go on a helicopter ride the next day. They had a good time. Unfortunately he wasn't up to going on a submarine ride on Friday. My BIL, John, took the other 3 boys and went while my sister, Karen, stayed at the hotel with Marcus. They are scheduled to arrive home today and Marcus will see his doctors in SLC this week. I'm sure they will need to do more tests before they find out if this tumor is even operable. I talked to Karen on Friday night and she said that they are all ready to go home and deal with "it". They have enjoyed being in Hawaii (their hotel is right on the beach!) but it is time to go home and face reality. Of course we are praying for the best outcome possible.
Thank you for your good thoughts and prayers for us!

Wednesday, August 13, 2008

Quick Prayer Request

It's extremely late and I'm soooo tired but i wanted send out a quick prayer request before I head off to bed.

I've mentioned my nephew, Marcus, who is battling brain cancer, here before... well, he and his family are on their Make A Wish trip in Hawaii right now... long story short, Marcus got sooo sick that they had to take him to the ER. A CT scan and MRI later they have found ANOTHER BRAIN TUMOR! I called my sis and talked to her about it as soon as I got the email from my mom. Apparently the tumor is in the back of his head but they don't know exactly where nor how large. The doctor who found it (in Hawaii) contacted Marcus's doctor in Salt Lake. After all was said and done, they sent Marcus "home" (back to their hotel) with steroids for the swelling and some pain meds. They are going to finish their trip in Hawaii and then see their doctor next week and make some decisions.

Marcus is supposed to have a tour of Pearl Harbor (his wish!) tomorrow today. I really hope he feels well enough to go and can enjoy himself. He has earned it - and he has some more really tough things to deal with when he gets home. Please pray for Marcus and his family.

I hate, hate, HATE THIS!