Tuesday, October 28, 2008

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
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.

Saturday, October 25, 2008

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...


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.

Monday, October 20, 2008

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!

Thursday, October 16, 2008

Jessica had surgery on her leg

Jessica's hematoma has been continually getting worse so I took her to a doctor last week on Thursday. Actually, we weren't able to get in to see her primary card doctor so we saw a nurse practitioner. She numbed an area on the hematoma and took a sample. She wanted to make sure that Jess didn't have an infection. It seemed to be fine so she referred us to a surgeon. She said that they may want to make a small incision to drain the blood but a surgeon would have to do it.

I called the surgeon's office and they said, "You need to see our vascular surgeon" so we set up the appointment for Monday afternoon. The surgeon took a look at it and kept saying that she needed to have it drained. There was an area that had been a small scratch but Jess had kept picking at it and we were all concerned that it would become infected. Karl and I both felt that it needed to be done and when he said, "Let's do the surgery tomorrow afternoon", we decided that sooner was better than later. Jessica had been keeping me up all night every night since her appointment on Thursday because she was so afraid of what the surgeon might say! So let's just do it and get it over with. Karl called in sick so he could be there with me. Thank goodness! (Gosh I love that man!)

The surgery itself, which was Tues at 1:00pm, went well. We arrived at TMC at about 11:00am. We were so glad to have two very special visitors from our Tu Nidito group. First Amanda came bearing gifts! Jess got a gift card to Target. *woo-hoo!* She was a great distraction for Jess while I went over Jessica's medical history with the nurses. Just as Amanda was leaving, Susan came to stay with us for a while. She is also from Tu Nidito. We were so glad to have them there. Susan was able to stay with us until just after the surgeon came out to talk to us post surgery. She is so sweet to stay with us and just be there.

I spent quite a bit of time talking to the anesthesiologist about Jessica's unique cardiac anatomy. He thanked me several times for explaining it to him so clearly. He then asked me about Jessica's living will and if we wanted to waive it for this procedure. I told him no. He explained that the medication could possibly send her over the edge temporarily but could be reversed. I asked him if that involved compressions and intubation. When he said yes I shook my head and said no. You can't do that to her. So he then asked if he could talk to Jessica about it. I said sure but you have to understand that she is at about the level of a 3rd grader. So he started talking to her and I could tell that she didn't understand anything he was saying. When he was done I asked her if she wanted the tube in her throat. She adamantly said NO! "And if you do, you'll be in big trouble! And my daddy is a police officer" hehe... He then told Jess that there would be NO tube and Jess was satisfied. The doctor turned to me and I told him that I would be in big trouble if Jess were to wake up intubated "or brain dead" the doctor finished my sentence. I told him that Jessica's heart can't be repaired, her health is deteriorating and now she is experiencing bowel ischemia among other things.... there's no way she would want to survive another stroke or even wake up intubated. He seemed to really understand. Oh yeah, what was interesting is that when he was trying to talk to Jess, he started off by saying that it's very rare for him to work with people with the same type of heart problems as her because none have survived this long without being repaired. He knew she had pulmonary atresia but didn't know to what extent... when I told him that there was never a connection between her pulmonary artery and right ventricle of her heart and that there still isn't one, he was very surprised. She is my miracle for sure! I told Jessica that she is unique and special. That got me a smile.

We had to keep reminding everyone that Jessica needed a huge dose of antibiotics before the surgery and it was actually the anesthesiologist who ordered it and got it going. He was also the one to start the IV since everyone else apparently had other things to do. *gah!* I love that doctor because he took the time to talk to me about Jessica's unique cardiac anatomy and what her oxygen sats are. He really listened and cared. I don't remember his name but he is German. He had an accent but I could understand him just fine.

The surgery went well. The surgeon told us that he was able to extract a lot of blood from the hematoma. The problem is that the surgeon didn't mention to us that Jessica would have an open wound that would have to be cleaned and packed every day! He said one thing and then did another. He told us what kind of wound she had AFTER the surgery. Karl and I started asking him questions and he seemed flustered and said, "We went over this yesterday". Excuse me... we aren't stupid. We would know if he mentioned, "open wound" and he didn't say anything about it during our visit on Monday. Every time we tried to ask him questions he would say, "you are getting ahead of yourself" and kept saying, "She will be fine". So after the operation the surgeon said, "I'll have to check my schedule but I want you to come into my office on Thursday so that I can look at it and change it. I don't trust anyone but myself with this. Then we'll set up wound care" So we were sent home with the idea that his office was going to call us and set up an appointment for Thursday.

Meanwhile, Jessica has been having a lot of pain. We finally got her pain level down and she went to sleep at about 2:15am - and that's when I went to bed. At 4:00am she got up saying that her leg was really hurting and something about her bruise... I thought she had opened up the bandage and panicked. Karl and I both got up with her and the blood had soaked through the bandage. She was crying because she thought I had accused her of doing something she hadn't done. We got her settled down and Karl sent me back to bed. Karl was able to get a hold of the surgeon (at about 6:00am is when he called us back). The surgeon said, "bring her into my office so I can look at it and change the bandage. I will be there between 9 - noon." Jessica had finally gone back to sleep so Karl let her sleep (and slept a little himself) and then got her up and took her in at 10:00am. Nobody at the office knew Jessica was coming in and get this: the surgeon called in sick! What the....??? He had told Karl at 6:00am to go into the office and then turned around and called in sick - and didn't tell anyone that Jessica was coming in?!

The assistant changed the bandage and cleaned out the wound and then repacked it. By the way, after surgery, the doctor had said that the incision was only about "this" big - using his fingers to indicate about an inch long incision. Well, Karl says that the incision is about 3 inches long and that you can see all the way into the bone! Poor Jessica had no idea that it was open and she was shocked at seeing her own bone and tendons, etc. She said that is really stung when they cleaned it and it hurt really badly when they packed it. The assistant said, "I'm surprised that TMC didn't send you home with wound care. They usually do." Well, the doctor didn't set it up so how could the hospital do it? Also, the office said that the surgeon never comes into the office on Thursday and they didn't have an appointment set up to see him then either. They almost acted like we were crazy and didn't know what we were talking about. I'm just blown away at how nonchalant this doctor has been with us. Poor Jessica has been traumatized and keeps saying how her leg didn't hurt this bad before surgery. We are trying to keep her down and her leg up. She has soaked through her bandage twice already tonight. (Weds night) They gave Karl a package of gauze to put on top of their dressing so we have been doing that. We have been trying to get wound care set up through the nursing agency. If they don't have it set up then we'll have to take her back to the surgeon's office and have the assistant change it again. Jessica wants me to learn how to do it. I've always been so queasy about these kinds of things. I've had to take care of her wounds before but nothing like this. I've had to make myself NOT throw up or pass out while caring for her post heart surgery or cath and all the while praying that God gives me the stomach to do it. I have been so sleep deprived lately and emotional thinking about how Jessica got the hematoma in the first place, knowing that she doesn't have a very good quality of life in the first place and now for this to happen to her. I've been thinking about Marcus and how sick he is becoming and now I have to take care of this very nauseating wound... and hearing my daughter crying because she is in pain and has been traumatized.... I've been a wreck. Thank goodness Karl was able to take Jess in today and I was able to get some sleep. I'm feeling a bit better tonight and even dealt with her bandages.

If only we knew all the details we probably would have insisted on having a surgeon who goes to UMC and we could have prepared Jessica and ourselves for post-op care. We also would have had home wound care set up.

Tomorrow will be better. It just has to be. Good night.

Tuesday, October 07, 2008

Very important prayer request & more


Rene and Rob have still been trying to find jobs, are trying to sell all their belongings and are still trying to find a way to get back to KY to reunite with their other children and family. Rob has heart problems himself and is limited as to what he can do for work but he is not "sick enough" to get social security. They have disconnected their internet and other "luxuries" and access the internet at the library. I haven't ever seen a family try so hard to raise money - especially for the cause of reuniting their family. Rene had some rude comments on her blog as to why she is trying to raise the money and I am just angered at such insolence. All they had to do is go back and skim through her blog to see how hard they have fought to care for their family. Tommy was a very, very sick little guy and they took care of him so well! It's just a tragedy! I was able to get the code for a paypal button so those of you who are able, can just click on it and send money to this family. I know I will use it.

Thank you so much.

I didn't get a chance to post about the passing of a very special little boy, Tommy, on August 20th. When I found out that he passed away, I was in shock and then cried like my heart would break. We have far too many children dying from congenital heart defects. This was quite a surprise since Tommy seemed to be improving and doing quite well. I'm really sorry that I didn't get to honor Tommy at the time of his passing but I am trying to do that now. BUT.... the story doesn't end here though... not by far.

Sweet Tommy - June of 08

Tommy and his brothers

I just found out that his family is in dire straights. Tommy's dad lost his job 5 days before Tommy died. The bills and lack of job have left the family destitute. They need to be able to move from SC to KY where a job is waiting for Tommy's mommy, Rene, but they are unable to afford to rent a truck to move their belongings. They will be able to stay with family while in KY while they get back on their feet. It's such a sad situation - one that I've seen before. Not only does the family have to deal with the sudden death of their son but they can't afford all the bills - and to lose the only income is just beyond what I can imagine having to go through. Rene's blog is Musings of A Heart Family ... here she describes more of what is going on. She also has so many great pictures and video clips of Tommy and his brothers... you can't help but fall in love! I've been following Tommy's progress for quite some time and he was such a sweetheart! It just breaks my heart that he is gone and his family is going through so much. Please pray for them.

There is a memorial fund set up for Tommy's family and if you find it in your hearts to send even just a little, maybe Rene and her family will be able to get back to KY and try to pick up the pieces of their lives.

The info for the memorial fund is: Thomas Dereksen Memorial Fund, Account #2006015960, First Federal, PO Box 118068, Charleston, SC 29423-9910

One CHD organization has donated some funds, which is very appreciated, but more is needed. As of Oct 31 they will be homeless.

Friday, October 03, 2008

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!

Thursday, October 02, 2008

Pictures of Jessica on (and off) the horses

Here are some pictures that I promised you and even a video clip of Jessica riding the horse.

Here is Copper saying "HI" to Jessica. Leisel is the girl holding Copper's reins.

Look at the procession! Leisel is getting ready to lead Copper, Sabin and his mom are on one side making sure that she doesn't fall, Brother Womack is on the other side and Daddy is pulling the oxygen tank.

Look at Miss Jess sitting on top of Copper as the sun is setting. She is really enjoying just sitting there for a few minutes.

Here she is in motion. On the video clip Jessica had just said, "My grandpa is a REAL cowboy" and then as I turned on the video camera you hear me say, "Yeah, my dad"... because my dad is who Jess was talking about. My dad had a cattle ranch for many years so he is a cowboy. ;) I had to suddenly stop the video because I realized I needed to jump over the oxygen tubing or I would get knocked down by it. LOL (Tavia is riding Penny in the background to your right)

Sabin is on the left while Sister Womack gives Jess a hug.

Daddy's turn for a hug!

Sabin is so cute. He has to get his hug.

Here is the troublemaker. Tavia. She is telling Jessica that she groomed Penny just for her. She got Penny all clean and ready for Jess to ride. I'm just kidding about Tavia being a troublemaker. We joke around all the time. Tavia is a lovely girl and we love her and her family to pieces. This photo was taking right before Jessica fell. This is the horse that got spooked and bucked Jess off. It's ok, we forgive you Penny. It wasn't your fault. It wasn't any body's fault. In fact, everyone rushed to Jessica to see if she was OK. Everyone was so attentive and apologetic. Karl and I feel bad that the Womacks feel responsible. It's just one of life's experiences and it was great to have friends who love and care about us so much. In fact, Sister Womack, Leisel and Sabin came to visit Jessica today. It was really nice.

After the fall and things got calmed down. I had two cameras around my neck when I reached out and pulled Jess off the horse and onto myself. Jessica has asked me several times if I took a video of her falling off the horse. uhmm... no. I was too busy catching you to take video, dear. LOL She's so funny. But look at how brave she is. She just took the fall of her life, not to mention a very scary on at that! And here she is smiling only about 20 minutes after it happened. (At least we fell on that "soft" dirt. We both would have been in a world of hurt had we fallen on concrete or an asphalt road!)

Is that a hoof-print that Karl is pointing at?

ahhhhh, a familiar site: paramedics attending to Jessica. Actually, the guy on the left was pretty cool. So was the one in the middle of the picture with his back 1/2 way turned. They didn't panic when we told them about Jessica's low sats. The dude taking her pulse was trying not to panic and insisted that her hands must be cold when her pulse-ox was at 82%. I said, "Jessica! 82%? That's pretty good! You ought to fall off a horse more often! " The paramedic on my left thought that was funny as Jess said her typical, "Oh mom." Karl was telling her that she was a real cowgirl now! You have to be bucked off a horse at least once to be a real cowgirl. ;)

The pros transpoting Jessica to our SUV. Jess did a really good job allowing them to move her. She insisted that she didn't want to be carried but she did what they told her to and they did great. As the one paramedic saw me taking these pictures he asked if they were for her "cowgirl scrapbook". I said, "you bet!" and handed him my business card. I'm just kidding! I didn't give him a card but I wonder how he knew about scrapbooks. Gee, do you think I missed out on a sale? (I sell Creative Memories scrapbooking supplies - doh!)

Not too happy waiting in the ER room. The pain is getting worse and we haven't been seen yet. At least she has an ice pack on.

We are finally eating something after the blood draw and x-ray. There is actually a picture of me! (not quite sure if that's such a good thing or not....)

Can you see Penny's autograph? Good thing she doesn't wear horseshoes or Jess most likely would have had a broken leg. I believe if she had been hit just one inch towards the center of her leg then it definitely would have been broken. We truly were blessed in so many ways.

Posing for the camera as we wait and wait for the results so we could go home. By that time the Oxycodone has taken effect and she was moving her leg, toes and foot around pretty well. We knew by that time that it was not broken but we needed to see if it even had a hairline fracture.

Yay! We are HOME and boy did Jessica miss her bunny, Mary! And of course her bed sure is more comfortable - and it has Barbies in it!

This is what her leg looked like on Monday, one day after the accident. Now it's a little less swollen but very dark purple and it's all around her leg. Very colorful! She is doing quite a bit better now but still needs more pain meds than usual. (she is up eating right now - 5:15 AM!)

While at the ER, the doctor (resident) came into the room and said, "so she has Tetrology of Fallot" and I said, "don't forget about the pulmonary atresia!" the doctor then went on to compare Jess with the girl who chewed the gum in "willy wonka and the chocolate factory" and turned such a lovely color of blue. LOL I'm so glad he didn't panic over her. Later, when he came in to discharge us he said, "other than the hoof-print on her leg, she looks pretty good". LOL! He was pretty funny and really nice. He said it was great that Jessica was riding horses and making the most of her life. We try. We get worn out and get scared to death but we try. I can't tell you how scared I was as I was trying to pull Jess off the horse and onto myself and saw Jessica's head going down as the horse's hoof was coming up. We landed on the ground and I was trying to get Jess off my left side and lean her against me while trying to get her face up so I could see if she was bleeding, conscious or even alive. THAT was such a scary moment! wow! I'm trying not to relive that because she is fine. *deep breath* she. is. fine.

for now...