Marcus's Butterfly

Three years ago my nephew, Marcus John Russell, was laid to rest following his brave battle against brain cancer.  Jessica was recovering from surgery on her leg and had an open wound... I couldn't leave her so we held our own memorial here at our house.  Just as we were getting ready to start our memorial a butterfly got into the house and flew to the light over our table in our family room.  It fluttered around the light and then fell onto the table. 

 It opened it's wings and allowed us to get a good look at it.  Jessica was a little nervous but we were all impressed that a butterfly flew into our house after dark!  We've never had a butterfly come into our house and aren't they supposed to sleep at night?

I grabbed my camera and took pictures. Karl took the envelope with it's little passenger outside and the butterfly flew away. We had our memorial and Jessica said, "Marcus sent us that butterfly, huh Mommy?" She kept telling me that Marcus sent it. 

Karl with Austin and Brandon

During our memorial some of us wrote notes to Marcus and then we went outside. Karl built a fire and we put the messages in it so the flames could symbolically take the messages to Marcus in heaven.

Jessica and Austin

We discussed many things that we loved about Marcus and how we would miss him.  We also talked about heaven and how there is no pain there and that Marcus can see and walk again.  We also talked about who was there with Marcus.

 Austin comforting Jessica and Dad coming to help 

 flames symbolically taking our love and messages to Marcus

Jessica and Austin

As we were getting ready to go back inside another butterfly came and fluttered around the light on our back patio. I already had my camera so I flashed some quick pictures. At first we thought it was the same butterfly as before but looking at the photos I can see that it's a different one. It could even be an orange moth but the first one was definitely a butterfly.

Almost two years later, as Jess lay on her death bed she promised to send me butterflies from heaven like Marcus did... and she has!

I love and miss my girl and my nephew, Marcus Russell. He did so much to comfort Jessica and help her move from this life to the next. I'll be eternally grateful to him. ♥

6 Months

I can't believe it's been 6 months since Marcus earned his wings. It feels like just yesterday since the pain is still so raw - in fact, most of the time my heart can't believe that he is really gone. It seems like just yesterday that he was here at my house, playing video games with my kids and hanging out with Jessica.

Here is one of my favorite pictures of Marcus and Jessica - the last time we would see Marcus while on this earth.



The following is a video that my sister, Karen, made to help with Childhood Brain Tumor Awareness. I've posted it below. *warning - you'll need a tissue!*

Photo and video editing at www.OneTrueMedia.com

I'm sure that to Karen, and her family, each day without him feels like an eternity.
My heart and prayers go out to her and her family. We love you so much!

Here is Marcus's Make A Wish trip story;
posted on the Make A Wish Foundation of Utah's blog.

Marcus, we love you and miss you terribly.
Thank you for watching over us - especially Jessica.
We are so proud of you too.

Love you forever,
Aunt Nancy

Life's a Bit Rough Around Here

But that's the way it goes. Miss Jess is in a lot of pain every day. The first thing she says to me when she wakes me us is: "Hi Mom. I feel HORRIBLE! and flops down onto my bed." I help her in the bathroom, make sure she's taken her carafate (meds for her tummy - has to be taken on an empty stomach) and give her some morphine. When it's time for her to eat, sometimes all she can eat is jello - or even just 1/2 of a small jello cup. She will drink some soda though. The last few days she has wanted a "Ham & Cheese Hot Pocket" so that's what she's had. She has eaten the whole thing or only left a bite or two. I'm so glad we have found something her tummy can handle. That is until she gets tired of them. She eats off and on during the day and will have a few snacks at night. I have to make sure she eats enough of her tummy will be in extra pain later. She gets morphine several times a day.... and she gets tylenol too.

Her sleeping is less than desirable... even if she gets to bed by 2:00am (which is early) then she will sometimes get up just a few hours later in pain and needing morphine and sometimes needing to eat. Sometimes she will go right back to sleep and sometimes she is up for several hours. Other times she may get very emotional and not even get to sleep until long after sunrise or even after Karl and the boys get off for the day - maybe 9:30am. It's getting to be hard work just to feed her and help her get her rest. I sometimes feel like I'm caring for a 130 lb, 20 yr old newborn with the schedule she has.

On top of all this my fibromyalgia has been acting up - as it usually does this time of year - and my poor body just can't figure out WHEN or HOW to sleep. I can't take a sleep aid because I have to be able to help her if/when she gets up. She takes enough sleep aids to put both of us out for 12 hours but that's another story. LOL!! Sometimes I stay up even after she is in bed because it is the only time I get where nobody is demanding my attention or needs something. I know it's not a good idea to do it too often - my body is really wanting to sleep right now, for instance - so I had better hurry.

The big news that I've been dreading posting is that Jessica really does have Ischemia of the bowels - both the GI doctor and the peds cardiologist checked out her CT scan. So in layman's terms... the artery that takes the blood to the gut is narrowing and she is getting less and less blood flow to that area. On top of that, due to her sturcture of her heart, she gets much less oxygen in her blood than normal so that's double trouble. Ischemia can cause pain (severe pain), diarrhea, constipation, an obstruction, necrosis and death. The only way to fix it is to do surgery and replace that section of the artery.... except that with Jess, that's not possible. Her whole artery system is going bad. Her whole bowel system is going too... She has to have 1 1/2 - 2 times the normal adult amount of Miralax just to keep her pooping every day. The only treatment possible is to give her morphine for the pain and more Miralax to keep her "going". The things we need to look for is vomiting and blood in her stools. These are signs that her intestines are necrotic and she probably won't survive more than a month or two. The GI doctor said that if that happens then we need to make the decision as to whether to take her to the hospital, call hospice or both. WHAT? I can't imagine her hanging on for a full 2 months while vomiting, etc. Karl and I have talked about it and if it comes to that point, we may have to discontinue all treatment except for pain relief. That would mean taking her off her heart meds too. Her previous pediatrician told me recently (when I told him about Jessica having 10,000 PVCs (arrhythmias) every day and her risk of ventricular tachycardia - he said, "that would be the best way for her to go, really"). He didn't say it in a mean way, he had been through all of Jessica's ups and downs including strokes, lung bleeds, etc. He meant it in a positive way. V-Tach would be fast. The GI thing..... not so much.

We have been chocking on this news. It just seems we get over on hurdle and we are faced with yet another way for her to die. I just don't want my baby to suffer. She has already been through so much... I just want her to be happy.


On the other hand, Jessica has been spending a LOT of time with Marcus. They go to Disneyland every night and ride all the best rides, have races as to who can eat their cotton candy the fastest and laugh and laugh. They even get to ride on Jessica's ride that she invented called "Genie's Magical Lamp". Several years ago Jess came up with the idea for this ride and has wanted Disney to make it. Every day Jessica gives me a hug from Marcus and I tell her to give him a hug back from me. She told me that every time she dreams about Marcus, it makes her sadness that he died go away a little bit more. I told her that I think it's awesome that she gets to spend so much time with him.... much more time than when he was alive. I also told her that Marcus is telling her that he is OK. {She has told me that the first few times she dreamed about him, she was crying and he asked her, "why are you crying?". She would tell him that it's because he died and that she missed him. He would then give her a big hug and smile and tell her that he was OK and that she didn't need to worry about him.} We talk about how he is having fun in heaven and he will be there for her when it's her turn to go home. Jess said that she isn't afraid at all when she is with Marcus. She even goes on the biggest roller coasters with him and doesn't get scared when in real life she is very afraid of heights and hates going on rides. I asked her if she has her oxygen on while going on the rides with Marcus and she said, "No! And I don't need my glasses either". She even said that she RUNS to him and they give each other a big hug. She says that everyone at Disney know her and Marcus and they let them go to the front of the lines and they don't have to pay either. LOL (it's just like Jess to be the center of attention and the center of every one's hearts!) Karen (my sister - Marcus's mom) told me that Marcus always was a daredevil and he loved to go on roller coasters so I'm sure he is enjoying his trips to Disneyland with Jessica too. Marcus missed his only opportunity to go to Disney when his band went but he was too sick with his cancer to go. Jess will never get to go to Disney - at least not while she's awake! LOL She is really glad for these dreams. I am so thankful for her dreams too. I miss Marcus. I miss Karen and her family too.

I am so grateful for my family and my friends. I can't get through this without you. It's been difficult lately with my being sickly and not being able to get out much. Seriously - sometimes I walk out to get the mail just so I can say that I went outside that day. I really need to try to go for walks... even short ones to try to get my mojo back. I have been making some cards and I did get to go to a card class last week. I am completely enjoying my new craft room that my dear, sweet husband built for me. I need to get it cleaned up a bit and post some pictures. You will be drooling! LOL

Thank you so much for stopping by and if you get a chance, head on over to my craft blog, FancyCrafty{Me} and oooohhh... and ahhhh... over my cards. :-P

Of course any prayers would be gladly accepted and appreciated.

((hugs))

Marcus's Memorial

Marcus's Memorial

Click on the link above to read Marcus's obituary. There is also a guestbook that you can read and sign if you like.

Marcus John Russell has earned his wings

From Marcus's carepage:

"Marcus John Russell passed away on October 26th, 2008 around 5:00am in his home. He fought to the end. He will be deeply missed by friends and family.

There will be a viewing held on Wednesday, October 29 at Nelson Funeral Home (162 E. 400N. Logan, Utah) from 6:00pm to 8:00pm. Services will be on October 30, at the LDS Providence South Stake Center, (360 E. 450 N. Millville, Utah.) at 12:00 pm. with a viewing prior to the service from 10:30am to 11:30am.

Thank you all so much for your continued prayers, support and love."

I have been trying and trying to figure out in my head how to post this very sad news. Of course I've been quite busy helping my children deal with all this and of course helping Jess with all her needs... including her wound. But I think I'm in shock. I can't believe that he is really gone. My family is having a hard time, especially Jessica and Austin. We seem to take turns falling apart and holding each other up. I haven't cried yet but that will come. Last week was the worst for me emotionally. I knew that Marcus was suffering. He was blind, couldn't talk much and was in a lot of pain. He was so dizzy and weak that he couldn't even roll over by himself. He went down hill from there. Weds night I fell apart and wept while in the shower - my crying place. I've been very emotional all week thinking of him, his parents and my mom who have been taking care of Marcus. When I talked to my mom on Sunday at about noon (she had called earlier but Karl and I were both sleeping so she called us back later. She knows that Jessica keeps me up all night. Karl instantly became emotional. We tend to work that way... Karl and I usually take turns falling apart and it was his turn. Austin told his dad, "Marcus is in a better place." and Karl said, "yes, and he isn't blind anymore!" When Jessica woke up I told her in private that Marcus had died and she cried and cried. She asked a lot of questions and I thought it was interesting that she was concerned that the next time Aunt Karen and Uncle JR came, Marcus wouldn't be with them. It is going to be so hard on all of us.

Karl and the boys were dressed and ready to go to church when we got the news and they decided to stay home. We spent the day & evening on Sunday talking about Marcus and where he is. My dad came to town and just happened to come to my house just as we were sitting down to have a "Family Home Evening" about Marcus and those who have gone on before us & the plan of salvation. My dad was able to contribute a lot to the conversation. It was almost as if we had planned on him to come to our Family Home Evening. Actually, my dad is always very late so it was better than if we had invited him to come. LOL

Marcus said his good-byes to his brothers and parents on Tuesday. Aaron (Marcus's brother - age 14) left to go on a band trip the next day - with Marcus really encouraging him to go. Aaron said that the band dedicated their whole year's performances and their performance Friday night and the band did the best they've every done. (Marcus was a member of that marching band and they have been soooooo supportive of Marcus the last 2 years) Friday night (at least I think it was Fri) Karen said to our mom, "it's as if Marcus isn't even here... I can't feel his spirit here"... and my mom said, "of course not. He's at the band competition." Aaron said that when they performed they could all feel Marcus with them. They made it to the finals!

The band members have been so supportive of Marcus. Two years ago when Marcus started the chemo and radiation his hair started falling out. When he went to shave his head, a bunch of band members shaved their heads too! Marcus's dad, brothers, uncles and cousins (all the guys) shaved their heads too. About 6 months later my hair was long enough that I cut 10 inches off and donated it to Locks of Love in Marcus's honor. They recently put on a fund raiser at their school for Marcus and his family. Marcus was able to attend and was so grateful for their help. You can read more about these events and see pictures on Marcus's carepage. www.carepages.com MarcusRussell (name for you to enter) and on Karen's blog: I Made It Through Another Day

Last November the Russells came to town for Thanksgiving. We had dinner at my youngest sister's house (Alice) but Jessica was too sick to attend. Karl stayed home with her and I took my boys and went to visit and eat. We had a good time and it was quite noisy with all the kids running around. My youngest brother, Stuart, and his family attended and my mom's sister came down from Mesa with her youngest son who is Jessica's age. Since Jessica wasn't able to go to the dinner, the Russells came to our house to visit the next day. It was nice since there weren't nearly as many people and Jessica got to really visit with them that night. I have some great pictures of that night. We didn't know that it would be the last time we would see Marcus... but of course we knew it was a possibility. Marcus was in remission at the time but with the type of cancer he had we knew it would come back. We just didn't know when nor how bad it would be. And of course there's always the possibility that Jessica could "go" at any time. She should have died many years ago but for some reason we have been blessed to have her here all these years. (I won't go into all the details right now but we have nearly lost her many times so we always have that in the back of our minds... this could be her last birthday, this could be her last Christmas, Thanksgiving, trip to the mall.... etc.) I made sure to take a few pictures of just Jessica and Marcus together and I'm so glad I did!

Here are all the cousins who were at Thanksgiving dinner last year in '07. Of course Jessica wasn't there so of course she isn't in that picture. These are all the kids... we also had 8 adults visiting with each other. Marcus is the one in the back, left-hand side with the hat on.

Me and my little sisters. Alice, Karen and of course me.

This was taken at our house. Marcus and Brandon playing video games.

Here you can see Jessica seated in the recliner to your left (Uncle John in the striped shirt in the background). Macus and Brandon on the couch and Noah and Jackson on the floor. Noah is the one pretending to be a bunny on the floor. LOL


Jessica and Marcus together. I just love this picture.


Here they are goofing around. Too bad this picture is blurry but it's neat to see these kids laughing, having fun and being regular kids.


One year ago Jessica's friend gave her the alligator that she is holding. That was shortly after Marcus was diagnosed and had surgery to remove his brain tumor. Jessica named the Alligator "Marcus because he is so strong, just like an alligator". The star that Marcus is holding is something that Jessica made for him at our local support group, "Tu Nidito". They were asked to decorate their star for someone who inspired them. Jessica said that she made it for Marcus because he is strong and is helping her be strong too. Jess saved that star for almost a year until she saw Marcus again. If you have ever seen Jessica's room, you know it was quite an accomplishment for her to keep it that long and not lose it! (her room is the black hole! - once something goes in, it never comes back out!)



My friend, Melanie from Hands, Heads and Heart has posted about Marcus and his family here and here. She has graciously requested prayers and RAKS such as cards to be sent to the Russell family. We are hoping that Marcus's story will travel the world since Marcus wasn't ever able to do so. He was (and is) a remarkable young man. We have been so fortunate to have him in our family for 17 years here on earth.... and for all eternity to come. Jessica and I have talked about how nice it is that he will be there when it is her turn to go to heaven. Hopefully it won't be too soon.

Melanie, and I were discussing the effects of a rock being thrown into a pond and what the ripples represent. If you do something good then it will affect all those around you like the ripples in the pond. Melanie said,
"Marcus is a huge ripple who is and will continue to affect many people with his story."

Here is a picture of Marcus that was taken just over a month ago. His face is swollen from all the steroids to help keep the swelling on his brain down. Look at his eyes. His eyes see beyond this life. In fact, he was already starting to lose his eyesight when this picture was taken. He couldn't walk because he was too dizzy but look at his eyes. He knew he was terminal at this point but still smiles. His eyes see something better to come. Something we can't see without faith. Marcus has that. His strength and faith have been an inspiration to me.



Here are the Russells. They are such a great family. Please continue to pray for them.


If you pass on this prayer and RAK request, please let me know so that Melanie and I can go to your blog and thank you. Here is what Melanie posted on her blog:
"If you are able, would you consider putting Marcus's pic and part of this post on your blog? Can we let others know who he is, that he was here? When Karen asked Marcus what he would like the world to know about him and he said, "I am the dark night - I am batman". (When you read their blogs, you'll see they are always ready to lighten the mood with a joke, no matter the circumstances) Nancy says: "He is a man of few words and he doesn't even want to think about what to say. (But they were excited about this idea of posting his pic and gave it their blessing) "BTW, Marcus has always been a fan of batman and a WWII buff. (Family) recently took Marcus to an air force base and the airman presented Marcus with a helmet and other things. They were impressed with Marcus's knowledge of the jets and he even knew all about a new one that will be available next year."

You can also leave comments for the family and get updates at: http://www.carepage.com/ (set up an account and then click on "visit a carepage".... enter "marcusrussell" no spaces - and it will take you to it)

Here is an address for RAKs (they gave permission to list it here)

I Made it Through Another Day
http://lagorda67.blogspot.com/
Karen's address is:
Karen Russell or Marcus Russell
100 W. 500 S
Providence, UT 84332

Thank you all so much! Your thoughts and prayers really do help. As I had posted before, we aren't able to travel to the funeral this Thursday. We are going to have our own little memorial for him - also on Thursday after Karl gets home from work. I'm also praying that all my family who are traveling to attend the funeral are protected and travel in safety.

Prayer Request for Marcus and Jessica

Please pray for my nephew, Marcus, and his family. As you have read in my previous posts, he has brain cancer that came back with a vengeance. The new chemo treatment was not working and after a lot of thought, tears and prayer, he and his parents stopped all treatment. He knew he was not going to survive this time. Here is the message that was posted by my sister on Marcus's carepage yesterday:

"I always hate to post somber news, but I know there are a lot of people wondering how Marcus is doing. He really is deteriorating fast. We are pretty sure that he could "go" at anytime now. He is so week, unable to see or even speak much. His breathing is getting more and more erratic and his pulse is fast and unstable. He has been in more pain, so we are adjusting his meds to keep him more comfortable. He mostly sleeps, he doesn't eat and only has very few fluids since he can't swallow much. We are just praying that he goes quickly so he doesn't suffer.

Thanks to all those who are getting Marcus's name out there for good thoughts and prayers. Thanks for all the well wishes, comments and prayers you have left here and on my blog. It is so wonderful to see how many love and care for us and especially Marcus.

With much love...

Karen"

I'm sure that you all remember my most recent post: Prayers for Marcus where I told you about Melanie's prayer and RAK request. At the time that Melanie first contacted me about doing the request we didn't know that Marcus would get so bad so fast. Melanie was hoping for cards to be sent to him to cheer him up. It seems as though the cards should really be sent for the family now. Marcus seems to be aware when people are in his room but isn't able to carry on a conversation. Of course any cards, email and messages left for him will be read to him but it's possible that by the time any cards that are sent reach their destination, he will no longer be with us. Please don't let this discourage you from sending cards to the family though.

I've been looking over some of the wonderful comments left on Karen's blog and Marcus's carepage. I see that some of you have already left comments and my sister and I truly appreciate it. I would like to thank you for doing so and encourage you all to continue to support Karen and her family as you have done for me and mine. (I sure hope I'm making sense because it's after 4:00am and I haven't been to bed yet.)

It's been an emotional and exhausting day for me. Jessica had to have her wound care done today and it was quite painful since the previous nurse hadn't pushed the sponge down into the wound as far as she should have and the nurse today had to open that part up again. *tears* It's been a very difficult few weeks since Jess obtained her wound (which I still have nightmares about), had surgery, had to go to the surgeon's office every day for wet to dry wound care and finally getting the actiVAC installed and set up on home-care. The wound seems to be healing pretty well except for a couple of areas... a possible small hematoma or abscess that we are watching at the top of the wound and then the center of the wound seems quite wide. When we saw the surgeon on Monday he said something like, "she may not need a skin graft after all." He has NEVER said anything about a skin graft! Let's just hope and pray that he is right and that she won't need a skin graft and that the area at the top of the wound resolves it's self. Jessica is not showing any signs of an infection and is still on an antibiotic for a few more days... so hopefully this will stave off any bugs. It's been very interesting to have to deal with two tubes. The oxygen that she always wears and the tube from her leg to the actiVAC machine. If I haven't mentioned the machine before now and you are interested to know what it is, go to http://www.activac.com/ . I haven't had a chance but I plan on posting a lot more information here (with pictures) about Jessica's wound and how this machine is really helping. We are hoping that she will be able to be disconnected from it next week! Jess is not able to have regular baths (sponge baths only) and she finally we able to feel up to leaning over the tub to have her hair washed after not having it done for 1 1/2 weeks.

Karl and I went to dinner last night (Fri) and discussed a lot of things. I realize that it's very unlikely that we will be able to attend Marcus's funeral. Jessica's wound is still a major concern and she neeeeeeeds me. Of course Jessica isn't up to traveling so my mom had suggested that Karl go and take the boys. Karl and I discussed it at length and we feel that it would be best if we stay together as a family and have our own memorial for Marcus right here. I had been thinking about that a lot lately and have wanted to do what's best for my family. It just kills me to not be able to go and be with my family but my husband and children have to come first - and they need me here. When our friend Zoe passed away, we wrote little messages for her and sent them on balloons up into the sky. Jessica knew that Zoe wouldn't really grab the balloons but it symbolized us sending our love and personal messages to her. It seemed to really help Jessica to have closure. Brandon and Austin participated in that activity with us and it helped us all. We will do our own thing here and either write our messages or verbalize our feelings and memories of Marcus right here at home.

If you need the contact information for Karen again here it is: Karen's blog: "I Made it Through Another Day" and http://www.carepage.com/MarcusRussell .

Thank you all so much! These are difficult times for my family but with so much support from so many loving people and our faith in God, we will make it.

Here is a song that I'm sure exemplifies what Karen and John (Marcus's parents) are feeling right now.

Prayers for Marcus

My new friend, Melanie, has posted a prayer request and RAK (random acts of kindness) for my nephew Marcus. Melanie is an awesome artist who among other things, designs stamps and makes the most beautiful cards and alterables. I came across Melanie's blog while browsing different blogs looking at cards that talented ladies like Melanie make. It's been therapeutic for me to get my mind off Jessica's and Marcus's medical problems while enjoying the gorgeous handiwork of others. I started leaving message here and there and apparently one of the messages that I left on Melanie's blog sparked her interest. She came over to the dark side... I mean to my blog and read all about Miss Jess and Marcus. Her heart went out to these two cousins and she wanted to do something special for them. We began emailing each other back and forth and I realized what a special person Melanie is. Apparently she has something up her sleeve about Miss Jess and I but right now I've asked her to concentrate solely on Marcus.

You see, Marcus is getting really bad very quickly. He is completely blind now and partially paralyzed. He is mentally and emotionally preparing himself for the afterlife. I am so proud of him! He listens to uplifting music and has his mom read to him about life after death from the best books. The whole family is preparing for him to leave. It's going to be hard for us all - especially for me and my family since we weren't able to travel to tell him good-bye nor will we be able to attend the funeral. Jessica's leg is starting to heal but she is still in so much pain every day and has to have the wound changes, and is so emotional... I just don't dare leave her. But Marcus knows how much we love him. We have always had a special connection. He "saved" me many years ago when he was an infant and Jessica was 3 yrs old, fighting for her life after a heart surgery went bad (hemorrhages, stroke, blindness, paralysis, blood infection). I would go to Karen's house and hold baby Marcus to me and rock him... I knew everything would be ok. Over the years he and Jessica seemed to have some connection and they have been best of friends. When Marcus was diagnosed with his brain tumor 2 years ago, Jessica talked to him on the phone and said, "If I can do this - then you can do it too!" Aunt Karen recently told Jessica that Marcus learned how to be strong from her. Jessica is so happy that she could help Marcus in some way.

Marcus may not last more than a few days... if even that. We are having to rely on our faith in God that we will be reunited again someday. Of course that day sure seems like a long time, but it will come. We are family and Marcus will watch over us from the "other side". Right now he is captive in his body as he prepares for his spirit to reunite with God and others who have gone before him. Preparations on the other side are being made to receive such a strong, wonderful young man. I am so proud to be able to call him my nephew. In a way I wish I could be there in that joyful reunion as he crosses through that veil and hears "well done".

If you have read this far and can see through your tears *wiping away my own*... Please visit Melanie's blog for her RAK and prayer request that she wrote. Hands, Head and Heart She posted a great picture of Marcus - one that he had professionally done just last month.

If you would like to send a card to Marcus and his parents, Karen & John, their address is:
Karen Russell or Marcus Russell
100 W. 500 S
Providence, UT 84332

You can also leave comments for the family and get updates at: http://www.carepage.com/ (set up an account and then click on "visit a carepage".... enter "marcusrussell" no spaces - and it will take you to it) Or go to Karen's blog: I Made it Through Another Day

I know that when we placed Jessica into hospice all the emails, cards, and messages of support meant the world to us. In fact, all your lovely comments are always welcome and heartwarming. Please show your love to my sis and her family.

Thanks you!

The Flood Gates Have Opened - Prayer Request

I've been trying to be brave all week and it's finally all catching up to me. First it started with Jessica falling off the horse and getting kicked. Her leg is still very swollen, bruised and sore. She has not slept well since then and then the last two days/nights she hasn't slept for more than an hour or two at a time. She finally told me that she keeps reliving the accident again and again and again. Last night she dreamed that she was underneath Penny (the horse) and was getting kicked in the head, stomach, etc. She didn't tell me about the dream, she just wouldn't go to bed or when I would finally get here there, then she would get up. I finally was able to get to bed for the first time at 7:30 AM! Then she got me up at 10:30 and then went back down at around 11:30. I kept getting calls from the nursing agency... first they said our aid had called off because her daughter was sick. I told them that I desperately needed a nap so they tried to find someone. Jess had finally gone to bed at that time so I decided to wait a few minutes for them to call back. 20 minutes later they said they had someone and she was on her way to our house right then but could only stay until 3:00. That was ok - I just needed a couple of hours that I KNEW I could sleep. I stayed up to make sure that I could let her into the house so the door bell wouldn't wake Jessica up. 30 minutes later the nursing agency called back and said that the aid had locked her keys in her car and couldn't get them out so she wasn't coming after all. Nobody else that Jessica knows was available so I told them to not worry about it. As I was finally getting ready to go back to bed at 2:00PM and trying to figure out if I should wait for Brandon to get home from school (at 2:25 or so) Justen came home and then was about to leave again. I asked him if he could stay just long enough to let Brandon in so I could go to bed when JESSICA'S DOOR OPENED AND SHE WAS UP AGAIN!!!!!! I wanted to just sit down and cry right there. I got her all settled, lunch fixed, drink in hand and she was set up in the recliner in playing the Wii. I told her I definitely HAD TO SLEEP. I was able to get about 2 hours of sleep before being interrupted by an "urgent" phone call. I took the call, laying in bed, and afterwards just started sobbing. and sobbing.

I'm upset that Jessica is having such a hard time dealing with her accident. She is so traumatized by the accident but she is trying so hard to be brave. She started crying this evening shortly after I had my major cry (I cried alone. No reason to upset her any more than she already is.) So I teared up with her and let her cry. We talked it out. I told her it's OK for her to cry and be scared. She said that part of her wants to ride Penny again but another part of her doesn't. I told her that was perfectly normal and not to worry about it. She will not ride any horse until she is all better so she doesn't need to be fighting with herself in her head about it. Just relax and get better. Tonight she started picking at some scratches on her leg and I told her to stop. She has really been picking at her arms and face the last couple of months and there's no way she needed to mess with her hurt leg. She didn't listen to me and I fell apart. We both ended up crying and then settled down. I finally got her to bed and thankfully she stayed there. I guess it was a good thing that I gave her an extra anxiety medication and two oxycodone. She sure needed it.

Lastly, I have been very upset at her GI doctor. He NEVER CALLED ME BACK! After the CT scan - A MONTH AGO - his nurse called me and told me that there is some narrowing of the arteries that go to her gut - Ischemia of the bowels - and there's nothing they can do about it. Try to treat the symptoms. I posted about this here. Here's part of what I posted: "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."

So neither the GI doctor nor nurse have called me back. We had an appointment with Jessica's peds cardiologist on Tuesday so I talked to him about it then. Dr. V went over the CT scan report and said that yes, there is some narrowing. No, the GI doctor never called him . I bet the nurse never gave him the message. What are we supposed to do now? Well, Dr. V. is going to contact the GI doctor for me and find out what the heck we are supposed to do. The GI doctor has Jess on 4 meds.... who is going to follow her for those? I have no clue when - or IF he even wants to see Jess again. (I feel like we have been pushed out of the igloo and onto the ice... out into the dark cold.) The PC also said that if we want to, we can talk to a vascular surgeon to see if they would want to try to open up Jessica's arteries that go to her gut. It would be similar to what they do with the pulmonary arteries - balloon or stents.... only Jess doesn't have access to the arteries through her groin nor her right arm due to cut-downs they had to do when she was so young. It's probably not something we would want to do anyway but the PC doc kinda talked me into at least just talking to them. If the vascular surgeon could even just look at Jessica's CT scan and see whether her arteries are even large enough to do anything with then we would know whether we even had that option and go from there. Karl has been working such crazy hours that I haven't even had a chance to talk to him about it much.

Also, Jessica's blood is getting really thick and when we see him in about 6 months we may have to do a treatment... they remove blood and replace it with albumin. She is at high risk for a stroke and they don't want it to get beyond a certain number. She is almost at that number. When the blood doesn't have enough oxygen it get thicker and thicker. We have to really watch it.

You see.... not only have I had a stressful week with Jessica but we found out on Tuesday that Marcus's chemo isn't working and he has less than a month left to live. He is already having difficulty swallowing and getting short of breath. I called Karen and talked to her. She seemed to be handling it quite well - at least right at that time. I know how these things go... you can feel strong one moment and falling apart the next.

It was just over 4 years ago that we had to place Jessica into a hospice program. Jess was coughing up blood and it was getting worse. The many tests showed that this was being caused by collaterals bursting and bleeding into the lungs. Any one of these events could be fatal. Some days it would happen up to 10 times a day! Other days she wouldn't have any. It was the most horrifying thing we have ever experienced and poor Jess would just wail because she was so scared - choking on the blood, gasping for air as she coughed up the blood. She was dying. She was too weak to get out of bed many days and on other days she would carry a bowl every where she went - just in case she had a lung bleed and could spit out the blood into that bowl. We didn't know at that time that hospice would help us so much that she would have to get kicked off their program after a year. They helped us start Jess on a morphine therapy that is preventing the lung bleeds! We didn't know that 4 years ago and we didn't know how much time we had left. Actually, we still don't know - of course none of us know that about ourselves - but Miss Jessica's body is still deteriorating and keeps having different difficulties because it's starving for oxygen and her heart can't keep up with the demands placed on it.

Sometimes I can't help but mourn what we have been through with Jessica and the life that she could never have. But today I also mourn Marcus's losses and the life he will never live. He is deteriorating fast. Tumors are in the brain stem now. His parents are contacting hospice for him. I grieve what they are going through and what they will go through. We don't know how bad things are going to get before Marcus goes "home". I HATE that my sister has to go through what I've gone through... and probably will go through again. I asked Karen whether she would rather have me fly out now or "after". She didn't know. I'm worried that if I wait until "after", Jessica will be so upset that I won't be able to leave her. Although by the way things are going with Jess this week, I can't leave her now either. My mom did remind me that if I wait and am able to go to the funeral, I'll see everyone.... many aunts, uncles, cousins, 2nd cousins, etc - some of which I haven't seen in 25 - 30 years. I haven't even had a chance to talk to Karl about this much either because he's been working so much this week.

We have a LOT of stress going on in our family right now. Please pray for strength for us all. Strength for my sister, her husband, her healthy sons and of course for Marcus. It has got to be hard on him to know that he is dying. Pray for strength for me and my family that we can all deal with all our stress a little better. Pray for SLEEP for Jessica and myself. Which reminds me: she is sleeping now so I had better get to bed and take advantage of it!

(Oh great - the dumb cat just threw up on the carpet. twice. LOL)

Oh well... worse things have happened - and will again! haha!

Good News and Bad

The good news is that Jessica is doing a little bit better. She has been able to eat more and her pain has been a bit more manageable. I've had to give her more morphine but it's taking the edge off her pain. The problem with giving her too much morphine is that it could potentially cause her bowels to slow down even more. We sure don't want that! I have to be very careful not to over medicate her but try to keep the pain down so she can enjoy her life. I am getting frustrated because I have not heard back from the GI doctor. I left a message for her peds cardiologist on Friday but just missed him as he left for the weekend. I am expecting him to call me today. I've been up all night and am getting ready to go to sleep. Yes, it's almost 9:00AM! Austin is coughing like crazy and he couldn't sleep much last night. We don't have a home health aid today so I really hope I get some sleep today.

The bad news is that my nephew, Marcus, is doing worse. He had his 2nd dose of the new chemo last Wednesday and things went sour right off. Marcus started with diarrhea and vomiting right away. The poor guy was confused and sooooooo sick! They were able to give him meds to help stabilize him and then he slept. He was admitted to the hospital and has been there ever since. He isn't able to get his sodium levels up and he is at great risk for seizures. His eyesight is also getting worse and is wearing an eye patch. My sister, Karen, has been posting updates on Marcus's carepage. Karen's blog is: "I Made it Through Another Day"

Go on over and give them a little love. They sure could use it!

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!

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.

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!

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!

By the way, we are home

ooooooops! I sent out emails to update people but forgot that my poor blogs still thinks that we are still in the hospital. We actually got sent home the very next day! I was a little worried about going home so soon but apparently it was the right thing to do. Jessica has been coughing a little bit but then again, she always coughs a little. I'm so relieved that she didn't have a sudden asthma attack after taking the medication. There is still a possibility of her having problems with the medication but so far, so good. I just need to keep an eye on her breathing and coughing (as I always do) and alert the doctors if anything changes. We are going to have to do a holter monitor sometime in the next week or two. I need to call the PC tomorrow and see when he wants us to do it. Jess has complained of her heart beating weird once since we've been home but that's not too bad considering she used to feel it multiple times a day, every day, last summer. Hopefully this medication will help stop the PVCs too.

I was soooooo glad to come home. I swear, those chair things that pull out into beds are HORRIBLE! I've tried using a cot that Karl uses when camping, but it didn't seem to be any better than the chair. I'm just getting too old for this. I keep saying that I've been doing this for almost 20 years but the truth is, it's almost 21 years. You know, Jessica is turning 20 next week but I took care of her and practically lived at the hospital with her the whole first year of her life - you know, before she turned one year old! So it's really 21 years that I've been taking care of her 24/7, watching her breathe, taking her to doctors, sleeping in the hospital with her, walking the hospital halls with her, etc. I'm too tired to type everything I do for this child. LOL My point is that I've been doing it for a long time.

I had a little chat with Dr. Samson, one of the Pediatric Cardiologists who specialize in electrophysiology. He was actually the one who admitted Jess to the hospital and Dr. Valdez checked in on her too. They work together with the other team of PCs. I asked Dr. Samson who was going to get the "short straw" and take over Jessica's case once Dr. D retires next month? He laughed and said, "Probably me... you know, we go way back! I remember holding her on my lap as I did my reports when I was a resident." We had been talking about how he was a resident here way back when Jess was a baby and we were "frequent flyer's". He said that there was a catch to that though... he is going to New Zealand in July and won't return until December! He will be working in the cath lab and learning new techniques and bringing them back to Tucson. I told him that I am a member of the PdHeart support group and that I know there's families on there from New Zealand. I should warn anyone on that list to watch out for him! He laughed and told me to say, "Whatever you do, don't go into the cath lab with Dr. Samson!" LOL So if any of you are in New Zealand, I'd love to warn you about Dr. Samson... except that I only have good things to say about him. He is a very gentle and kind doctor and he's pretty smart, too. :)

Dr. Samson said that he and Dr. Valdez will work together with Jessica since two heads are better than one. I mentioned that Dr. Klewer did Jessica's cath a few years ago and we really like him too. Hey, the more the merrier then! I think it's great that so many pediatric cardiologists are willing to work together to help Miss Jess. Dr. Donnerstein is retiring next month and we are really going to miss him. He said that as far as he is concerned, he is not retired when it comes to Jessica.... well, I guess he had better give me his home email address then. I'll let her send him emails everyday. LOL Jessica's new thing to do is send emails to me... they are really cute. She says things like, "I love you mom signed aka mary potter malfoy and princess jessie married to legolas" Of course there's no punctuation or anything and if you don't know who her "aka"s are, she will be happy to tell you the whole story - actually two stories that she has come up with. They could be considered fan fictions. Two nights ago I caught her sending an email to my sister, her aunt Karen. It was really cute and in it she told Marcus to be sure and take his medicine so it can help him feel better. Marcus is my nephew who is battling brain cancer ... he is having some emotional effects from the damage to his brain from the tumor and he won't take his meds... which is not helping. Anyway, if any of you would like some cute emails from Jess, let me know and I'll have her email you! She loves people and loves talking to them. I wonder where she gets that from... not that I've gotten off track of what this post is to be about or anything....

I wish to ask if any of you have dealt with anorexia? There's a young lady who was Jessica's roommate who is in bad shape. When I first saw her I wondered if she was an AIDS patient since she was so frail but after a couple of hours in the same room I knew what was wrong. I felt so bad for her. I have to admit that I got tired of listening to the 10-minute long discussions on whether she could eat two of the broccoli florets instead of all 3 since it looked like more than 1/4 cup, discussions on how many times she could walk to the playroom (she used to compulsively exercise so she is limited on that) and listening to her trying to play the games of changing her mind as to what flavor of pediasure she would drink in attempts to postpone drinking it. Sometimes she would get very emotional at mealtime and it would upset Jessica. I'm so glad that we were only there two days (one night) so that we could come home and not have Jess worry about her roommate. Jessica loves everyone and worries when she sees someone else having a hard time or being sad. While we were there I overheard this girl talking on the phone to her mom and wondered why the mom wasn't there. When we were packing, getting ready to leave, I saw the mom come in. I was really weird because just catching glimpses of her, I felt like giving her a hug. I felt a connection to her and she looked a little familiar but since the roommate insisted on keeping the fabric partition closed, I couldn't see her very well. As we were leaving, the mother said to me, "you don't remember me, do you?" I said that she looked very familiar but didn't know where I knew her from. Come to find out, she was the mother of the girl who planned and executed a special prom that Jessica went to a few years ago! This lady, we'll call her Ms. M, has a daughter who, if I remember correctly, had cancer and then decided to have a prom for teenagers who are battling serious illnesses. That was Jessica's one and only date she has ever been on! I have several pictures of the prom and will have to find them, scan them and then upload them here. Ms. M was there, helping her daughter with the prom and she was very taken with Jessica. She helped Jess pick out an outfit and some jewelry and she even painted Jessica's fingernails. Ms. M and I talked and we hit it off. Anyway, the one who organized the prom was Ms. M's older daughter, who is now in college. This young lady who was Jessica's roommate is her younger daughter. If I remember correctly, Ms. M's husband died of cancer, she had a bout with cancer and I believe her older daughter had cancer. Now her younger daughter has anorexia and will most likely have to be admitted to a facility... she is almost 16 and only weighs 79 lbs. I hope I'm not violating any HIPPA laws or any confidences but it is shocking to me that this disease could get so bad? I can see how this young lady would have a lot of stress with all that her family has gone through. Ms. M told me that her daughter came in with multi-organ failure from the disease. Apparently this isn't the girl's first hospitalization. Anyway, I'm just trying to wrap my head around this disease. There has got to be more to this girl's life than trying NOT to eat and trying to exercise to lose weight. Jessica tried talking to her several times about different things (she had to go through our side of the room to use the restroom and that's when Jess would attack talk to her. She only seemed interested in getting back to her bed and NOT talking to anyone. I felt bad because Jessica kept wanting to talk to her roommate... why not talk and try to make friends when you are both in the hospital. Don't get me wrong, this young lady wasn't rude or anything, but I could tell she wasn't interested in making friends. Ms. M gave me her phone number. I've been thinking about her a lot and will try to call her sometime. I tried to invite them to Jessica's birthday party but Ms. M said they couldn't come... it would just be too dangerous for her daughter.

You know, sometimes you do go home thankful for your own problems.

Cancer Strikes Again

I'm sure that most of you know that my sister's son, Marcus, is battling brain cancer. He is hanging in there and is such a fighter. He is having some side effects from where the brain tumor was. He is having a lot of emotional problems. He is now seeing a therapist and hopefully his outbursts will subside. My sister, Karen, has a blog called "I Made It Through Another Day". Feel free to stop on by her blog and say "HI!" Karen's MIL (husband's mother) was just recently diagnosed with cancer. I don't know exactly what type of cancer but John (my sister's husband) must be having a hard time. Both his son and his mother are battling cancer.

The most recent family member to be diagnosed with cancer is my niece, Ruth Ann. She is my older brother's daughter and is almost 21 yrs old. She was diagnosed with cervical cancer. She got married about 1 1/2 years ago. Her and her husband live with her family and I'm so glad that she has such great support. She is going to go to the Huntsman cancer center. At first everyone was really freaking out because the lab called and told them that she had cervical cancer stage 3!!! That would mean that the cancer has progressed quite far. We just couldn't believe it but apparently someone mis-spoke and she has cervical cancer TYPE 3, Stage 0!! Wow, what good news! It looks like they caught it early. What a blessing in disguise, huh? After that horrible scare, we are all relieved that it is in the early stages. Hopefully she will get the best care and beat this thing.

I wish she could come and visit before she has to start treatments. We couldn't attend her wedding because Miss Jess can't travel and is not doing very well. I don't dare leave her, in fact, I feel so crummy most of the time that I couldn't even imagine traveling. My brother Brian (Ruth's dad) is coming to visit next week. He is bringing two of his daughters, his youngest son and a granddaughter who we have never met. He had planned this trip awhile back and put it on hold as soon as Ruth was diagnosed with cancer. Now that everything is set up for her to get her treatment, he is going to come after all! We are planning on having everyone come her next Friday for dinner. Like I said, I wish that Ruth and Garrett (her husband) could come too.

If you wouldn't mind keeping Ruth Ann in your prayers along with Jessica and Marcus, (and my sister's MIL, Rebekah) I would really appreciate it.

Update/prayers for my nephew & latest on Jess

It's 5:30 am and I just got Miss Jess back to bed... again! She's not feeling very well and not sleeping well either. I've been sick most of the week and haven't gotten hardly anything done. I had high hopes of being able to accomplish something today - like taking down Christmas decorations! - but I think I will be sleeping as much as I can instead. *sigh* Since I'm up I figured I would go ahead and ask for some information and prayers for my nephew.

For those of you who don't know about my nephew, here's a quick background: Oct of 2006 at the age of 15, my nephew, Marcus, was diagnosed with anaplastic astrocytoma. The very next day he had surgery to remove it. He has gone through radiation and chemo and finished the maintenance chemo in Oct of 2007. Now he is supposed to have MRI's ever couple of months. Marcus started having a lot of pain in his legs and they have been giving out on him so they did an MRI ahead of time to see if the astrocytoma has spread to his spine and it came out clear. *big sigh of relief* although we still have no idea what could be causing the pain and sudden weakness in his legs. But wait.... there's more:

Here's what my sister wrote on Marcus's carepage:

"I know that was a big relief, Marcus's last MRI, and all is good in that department. But... we got a call the next day from the doctor that we saw that day. She said that she decided to look back at his last MRI reports and found something that she didn't know if we had been told about. She told John (the dad) that there was a "thickening" on the meninges caused by the radiation, but it was benign. I called her back this last week to clarify a little more. She said it was "meningioma" which to me and the research I have done, is another tumor that is mostly benign, but some can malignant. She didn't use the word tumor, but sounded pretty sure it was meningioma caused by radiation and that it has been on his scans since AUGUST. She said that if it gets bigger that they would send it to Neuro-Surgery and they would discuss surgery to remove it. To me that sounds like a tumor. Marcus's Dr. has been out on Personal leave so things have not been very well managed, in my opinion. So we are trying to decide as to what to do. We are looking at a second opinion at National Children's Hospital in D.C., plus we are looking at another Neuro-radiologist to read his scans again. With the advice of another Doctor, she thinks that having meningioma this early after treatment is almost rare-to-none. Anyway, sorry for rambling, but I just wanted you all to know what we are thinking about doing, and if you could keep us in your thoughts and prayers that we make the right decision. It would be deeply appreciated.
Thanks so much,
Karen"

If any of you have any experience with brain tumors or radiation/chemo complications, please email me or leave a message here. You all are such an awesome resource of information and support! We appreciate any prayers or well wishes too. Marcus's carepage name is MarcusRussell or click on www.carepages.com and then enter his name (no spaces).

Here's something that my sister didn't put on Marcus's carepage so shhhhh, I'm letting you all in on a big secret: The Make A Wish foundation came to visit Marcus and they are working on a wish for him! It may involve fighter planes or going on a trip... OK, that's enough info until Karen announces it on the carepage (or her blog). But like I said... it's a SECRET! ;-)


Last but of course, not least: We got the results from Jessica's last holter monitor. She is still having around 10,000 PVCs a day but seems to be having more symptoms OFF the medication so for now we are leaving her on it. I figured out that she was having tummy aches from taking the Procanbid right when she got up along with her Carafate so I have held the Procanbid until after she eats along with her other "morning" meds - which has to be an hour after taking the carafate. Unfortunately, sometimes I am slow to get her meds to her and so she has been taking the Procanbid more like 2 - 3 hours after waking up and the last few days she has been having more symptoms of her heart beating hard. It could be from the delay in giving her the Procanbid which makes me sad to think it could be my fault. But Jess has been sickly all week so she could be having break-through symptoms. It's hard to tell... and with me feeling horrible all week and not getting much sleep at night it's been a miracle that I've been able to give her all her meds. Thank goodness I have a meds schedule on the inside of the cabinet.

OK... enough whinning. Time to go to bed, set my alarm to get up in a few hours so I can cancel an appointment for Jess with her psychologist for this afternoon since it's supposed to be rainy, cold, windy and I just can't take Jess out in that type of weather. Besides, we haven't had any sleep. Then hopefully Jessica's aid will come and I can have a looooooong nap. Did I mention that as soon as we started feeling sick last week Jessica's aid got quite sick and was out all week? Fortunately we only went 2 days without an aid and an old friend/aid was able to fill in for the weekend. Otherwise I'd be in a padded room for sure! I hope our regular aid is feeling better. She's a single mom and it's gotta be hard going at it alone! Besides, Jess misses her. awww... Well, I can hear the wind starting up already and soon Karl and the boys will be getting up and going for their day.... Hopefully the next post will contain pictures that I keep promising you!