Bald IS Beautiful - update on my nephew, Marcus

Below I'll copy and paste what my sister wrote about the head shaving party held in honor of her son, Marcus. I'm posting some awesome pictures of the event! I am so glad that Marcus is doing so well and that so many people care about him and his family. The following pictures are 1) Many of the kids/teens who came to support Marcus in a head-shaving party. 2)top left to right: Mr. Dave Clark (school councelor), Kyle, Jeremy, Mr. Bob Henke (Vice-Principal) bottom L-R: Drew, Marcus and Trevor - all giving their meanest looks. 3)Marcus, Uncle Brian, Cousin Jenni (who donated her time and efforts to do all the shaving), Cousin Kevin, John (Marcus's dad), brothers: Noah, Aaron and Jackson. Karin - Marcus's mom doesn't seem to appear in any pictures - she was the photographer. :-)








"November 11, 2006

Wow! What a week we had! Wednesday we went to all the dr.'s and everything is looking good. Marcus has been pretty tired, and only went to 2 days of school this week, but he had a lot going on as well. After the long day at appointments we came home, had dinner then ran off to the Salon. My cousin, Jenni, volunteered to shave anyone that wanted it. So we met at her her Salon. What we didn't expect was that we had 22 people lined up to shave their heads along with Marcus, PLUS we had 20 girls there to help cheer on the boys, PLUS Marcus's school councelor and the VICE-PRICIPAL showed up to shave their heads as well, along with 2 brothers,an Uncle and a cousin. That place was so crowded, but it was a sight to see. When each boy got in the chair, all the girls ran over and ran their fingers through it for the last time. As soon as his turn was done, everyone would cheer loudly. I couldn't believe that one boy shaved off 5 inches of hair that took him 3 years to grow out plus it was soft and curly! When he went up for his turn, the girls took turns with scissors cutting curls off wishing they had his hair. It was just amazing. After it was all said and done, a co-worker of John's called a reporter for the local newspaper and now they are working on a story for monday. We tried to get everyone here for the photogragher, but we only ended up with 13 bald heads. It has been such an emotional support for Marcus that he hates to wear his beanie hat now. He is proud to be a part of his marching band buddies who all had to face snow the next morning... YIKES. " - - - written by Karen Russell

Here is the link to the news article: BALD IS BEAUTIFUL

The following are pictures of: 1)Marcus before - his hair was coming out in handfulls so he knew it was time for a shave! Then the picture of 2)Marcus After. He looks even more handsome afterwards! 3) John before the shave (Marcus's dad with a very nervous look on his face and his sons giving him bunny ears). 4) Marcus shaving his dad's head - looks like he is having a good time doing it too! 5) John afterwards. What a neat dad he is!










To read more updates and see more pictures feel free to go to Carepages name: MarcusRussell

Heart Specialist - oh really???

Heart Specialist


EDIT: This video has been removed at the request of copyright owner Sony Electronics, Inc. because its content was used without permission

This commercial annoys me on so many levels. First of all, being born with half a heart is a very real and serious heart birth defect. I know several families who have children born with HLHS (hypoplastic left heart syndrome)through my online CHD (congenital heart defects) groups. If it's not bad enough that the commercial makes light of being born with "half a heart", the commercial continues with the doctor having been born with 2 hearts! Wow, how convenient. THEN... she does open-heart surgery on this guy - on the sidewalk, in the rain - the man wakes up in the ambulance to see a heart-shaped scar on his chest. Oh puhlease! Then he asks the doctor what she did with the other half of her extra heart and there's a little "orphan savant" boy with a heart shaped scar on his chest and he calls the man (who just had heart surgery) "papa'". If the man is his dad then he isn't an orphan afterall, right? Another thing, if the doctor gave the man 1/2 of her extra heart and then gave the other 1/2 to the boy... why doesn't she have a scar on her chest? How did she do the heart surgery on herself? Oh wait... maybe she kept the extra heart in her pocket just for emergencies just like this one.

My daughter has had 5 heart surgeries and I just checked... nope.. not one scar in the shape of a heart. Silly us taking her to the hospital for her heart surgeries when we could have just had a stranger perform it on the sidewalk, in the rain, without anesthesia or ventilation, etc. Can you imagine the money we could have saved not staying in PICU for weeks at a time?

I also noticed near the beginning of the commercial they clicked on "ending for women". Does Sony really think women are that dumb?

I welcome any thoughts and opinions. (but no spam)

I don't care for statistics.

I've been thinking about statistics and how they are really just averages. But as I was thinking about the many times since Jessica was born that we have been given statistics - we are always in the small percentage. Here's what I was contemplating:

If I remember the statistics correctly, Jessica had a 2% chance of being born with any birth defect, 1% of which was CHD (again, I'm not sure of the exact statistic here). She was born with a complex CHD.

When Jessica had her first heart surgery at the age of 5 months old, we were told she only had about a 2 or 3% chance of having any complications with her surgery - it was a very routine placement of a shunt. Jessica had a stroke which affected her speech area of the brain and the right side of her body. She had to have on-going therapy to regain strength in her right side and we used sign language to facilitate speech.

As Jess got older the peds neurologist didn't think Jessica had a very high chance of learning to speak. (we weren't given a specific % but weren't given much hope) Jessica was 2 yrs old and could pretty much only say "mama" and "dada" but could sign over 80 words. We were told that her primary way of communication would be sign language. Well.... by the time she was 3 yrs old she was talking pretty well - and NONSTOP (still)!

When Jess was 3 yrs old she needed her shunt replaced. We were quoted the 2 - 3% chance of her having any complications and I reminded them that she already had a stroke. We were told that it didn't really put her at higher risk. This time she not only stroked but hemorrhaged for 4 days! She wasn't expected to survive the day on the 4th day and we were told to come and spend her last hours with her. By the afternoon the CT surgeon told us that "A power far greater than ours saved your daughter today - - we just stood here and watched a miracle". She was pulling through. Almost a week later she was off the vent and when she woke up we found she was blind and paralyzed on her left side. Long story short: the neuro-ophthalmologist didn't give her much of a chance of seeing again since the damage was done on the brain - not the eyes. She sure showed him! Yes, she wears glasses and her vision isn't perfect, but she can SEE! hehe... Of course she had a high chance of never learning to walk again... but she did! (she is in the motorized wheelchair to conserve energy).

Jump ahead (through many other miraculous, though difficult times) to 2004 when Jess was admitted into home hospice because of lung bleeds. Less than 10% of hospice patients come out alive (or improve and don't need hospice again... at least not for a long time). You guessed it, Jess improved and has been out of hospice for over a year.

Jess has out-lived everyone's expectations - including mine. She has suffered many more problems than anyone imagined but has come through like nobody ever expected possible.

The last visit to the Peds Cardiologist he said, "I have given up trying to predict what Jessica is going to do. Many times she takes the hard road but then turns around and comes through.

Me

Ron Taylor: My Dad.

Remember the post I made: "Who in the World?" with this picture:



Yes, that was my dad when he was in college. My parents came to town and my mom brought some other pictures of my dad for me to post here. He wasn't 100% goofy... at least not ALL the time. ;-)

The following photos were of him as a toddler, a more serious one when he was in college and then one of him and my mom that was taken in recent years. I'll have to look through my scrapbook that I made several years ago and see what other pictures I can come up with. I remember my mom getting after my dad because he would pull silly faces whenever anyone tried to take a picture of him. It's nice to see that there actually are pictures of him being serious.

Something to think about

I was very touched by something that a friend of mine posted on her blog. Jenny's Thoughts The thing that touched me the most was not even the event that she was writting about. It really caught my attention when she said:

"I hoped I would love God more by the end of the day than I did when I woke up."

Something to think about....

Every
Single
Day.

Thanks Jenny. :-)

Updates on Marcus and Jessica

First of all, Marcus is doing well. He is getting tired but handling the treatments quite well. I spoke with him tonight and he is not looking forward to the long drives this coming week (going to Salt Lake for radiation treatments and back - 1 1/2 hours each way - DAILY) but he has a great attitude. It was really cute to listen to Jessica talk to him on the phone. They were talking about their Nintendo DS games, etc and Jessica told him, "you get lots of cool things when you are sick!" I guess she was telling him a grand insider's secret. hehe... he agreed! I told my sister about their conversation and she laughed... and she agreed too. We also agree that if the sick kids don't deserve lots of cool gifts - then nobody does. We are proud of our brave kids.

Jessica is having a lot of tummy pain. I called the GI doctor on Thursday and we were told that he has done everything he can do and the next step is to do the endoscopy. I have not told Jess that yet. I told the GI doctor that we will talk with the Peds Cardiologist before we schedule that procedure. Karl and I were also thinking that if we can keep her pain under control by having her eat every little while and not letting her tummy get empty, then maybe we could put off doing the endoscopy... but that's not going to work. Tonight Jessica was crying in pain and even asking if she should go to the hospital. :*( She tried eating and couldn't eat much. Finally after an extra dose of morphine, some lorazapam and a father's blessing, she was able to eat a banana and relax and go to sleep.


Here is a picture of Jessica and Marcus in 2004. The story behind the picture: In October of 2004 Jessica had a Celebration of Life party at the "Z" mansion. Jessica was in a hospice program and wasn't expected to survive much longer. The Russells and other family members came to spend time with Jessica. She was so happy to see everyone. Good news is that her health improved and she is still here fighting every step of the way! She tells Marcus, regarding medical stuff, "If I can do it - YOU can do it!" She also tells everyone to NEVER GIVE UP.

Pictures of Fiona Elizabeth Anne

Here are the pictures I promised of my neice, her new baby and husband. I'm so happy that everything is going well for them and that my sis-in-law is there to help the new parents. I'm sure she is smooching the little baby and completely enjoying being a grandma.

Congratulations Bekah and Dylan. We love you and know you will be terrific parents... in fact, you already are!

The Baby Grand is here!

My family (parents, siblings and I) have always talked about how much we would like to have a baby grand piano... but since that won't happen anytime soon... my brother, Brian, is calling his new grandbaby the Baby Grand!

Remember my neice who is in England with a bloodclot in her leg and pregnant? Well, she's not pregnant anymore... little Fiona Elizabeth Anne Marquis arrived via c-section at 1:00 am on Oct. 24th (England time). She weighed in at 8 lbs, 2oz and was exactly one week early. Her momma (my neice) is doing well and now has a filter in her leg to prevent the bloodclot from traveling to her lungs. They can now focus on getting the blood clot taken care of. Grandma Melly (my sis-in-law) is leaving on Thursday to take care of Momma and Baby Grand.

Thank you so much for your prayers, they have helped a lot. I will post pictures of baby Fiona as soon as I get some. :-)

So... now I'm a GREAT aunt! (Of course I've always been great! ;-)

My Cousin Connie

Connie Christensen 1963 ~ 2006
With tender sadness we announce the passing of Connie W. Christensen, beloved and loving wife, mom, daughter, sister, cousin, and friend. She passed away peacefully at home on October 21, 2006. She was born Dec. 2, 1963, near Colonia Dublan, Chihuahua, Mexico, the oldest child of Dennis Keith Wagner and Carol Ivis Taylor Wagner. Raised in love, surrounded by family - parents, brothers and sisters, grandparents, aunts and uncles, and her cousins. They loved each other, loved having fun together, and loved the gospel of Jesus Christ. She attended Brigham Young University, and enjoyed tremendously her job as secretary in the Department of Religion. She married Brent Ray Christensen of Brigham City, Utah, in the Salt Lake Temple on June 26, 1987. They have two sons and two daughters. She served in various positions in The Church of Jesus Christ of Latter-day Saints, including the Relief Society, Primary, and Young Women's organizations. Her favorite assignment was to play the piano for the Primary children. Connie is survived by her husband, Brent and their children, Brent Jr., Michelle, Matthew and Megan. She also leaves behind her parents, Dennis and Carol Wagner and her siblings, Sydney Romney (Miles), Cheryl O'Sullivan (John), Dennis Wagner, Jr. (Erin), Kimberly Loveland (Eric) and Darryl Wagner (Emilee). Connie had the most tender heart and the sweetest soul. She was drawn to all that is beautiful in life. She loved sunny skies, seashells, moon-lit nights, and thunderstorms. Daisies and daffodils, lilies and lilacs, and roses, roses, roses. She loved reading, music and art. She painted with oils and watercolors, and arranged countless bouquets of flowers. She played the piano beautifully and sang in a clear soprano voice. Above all, she loved people - her husband, her children, family in Utah, Mexico, and throughout the world, and countless friends. Truly those who knew her best loved her most. God be with you, gentle heart, until we all meet again. Funeral services will be held Friday, October 27, 2006, at 11 a.m. in the LDS Manila Stake Center, 950 East 850 North, American Fork (North of the Mt. Timpanogos Temple). Family and friends may visit Thursday evening, October 26, 2006, from 6-8 p.m. at the Walker Sanderson Funeral Home, 646 East 800 North, Orem and from 9:45-10:45 a.m. prior to the services at the stake center. Interment will be in the Highland City Cemetery. Condolences may be sent to the family at: www.walkerfamilymortuary.com
Published in the Deseret News from 10/24/2006 - 10/25/2006.

Recent pictures of Marcus and his brothers

I just received some pictures from Marcus' Aunt Monica. Monica flew to Logan and took care of Aaron, Noah and Jackson when Marcus had surgery. Everyone really enjoyed her visit and it was so nice that she was there to help out while Marcus was in the hospital. These pictures were taken shortly after Marcus came home from the hospital after surgery. I thought I would upload a couple of those pictures here. I really appreciate them.

When it Rains.... It Pours!

Now that we are all getting used to the idea that my nephew is fighting for his life and battling an agressive cancer, more difficult situations have arised.

My neice who is living in England (haven't been able to find out exactly where)... is in the hospital. Her baby is due Oct 31 and she (my neice) has a blood clot in her leg. She was moved from an Air Force Base to an English hospital (still trying to find out which one). They were going to implant a filter to prevent the bloodclot from breaking off and going to her lungs but she went into labor. They had to stop the blood thinners and are preparing for a C-section. Her husband is so very nervous and feels so alone. They moved to England just a few months ago and don't know very many people there. Please pray for them.

My older brother's wife's sister is having a biopsy to see if she has breast cancer. If you followed that, please pray for her too.

One more thing... my mom called me today to tell me that one of my cousins that I grew up with died in her sleep last night. She has been sickly for several years and the doctors haven't been able to find anything wrong. She leaves behind her husband, parents, several siblings and children. She was only one year older than me.

Miss Jess Update:

Today was a pretty good day... Jess actually went to school!!!!!! School started mid-August and this is only the 3rd time she has felt up to going (or that we didn't have a doctor's appointment). Jess had a good time and even asked her teacher for homework. The teacher gave her a packet of cursive writting practice pages for her to do at her own pace. Several times today Jessica has taken it out and worked on it. I'm very proud of her wanting to learn.

Unfortunately Jessica has been having more and more dizzy spells, headaches and tummy aches. Well.... the tummy aches haven't gotten worse but they aren't much better. We are more concerned about the headaches and dizzy spells. During these episodes sometimes she has periods of seeing black and white. Monday she had what I feel was a true migraine. She was feeling nauseated and was sensitive to light. She felt much better after having a nap but the headache didn't completely go away. We can't get in to see the neurologist until Nov 29. I spoke to Jessica's primary care doctor and she doesn't want to start Jessica on any migraine drugs because they tend to make the arteries constrict and we sure don't want to do that to Jess with her complex medical history. The doctor gave me a prescription for nausea and said that sometimes that can help a migraine if it is accompanied with nausea. We'll see... Tonight Jess was feeling very tired and dizzy. She complained of tummy aches and headaches. I had to help her walk to and from the bathroom because of the dizziness. She started to get emotional but I helped her calm down. Karl got home from work at about that time and he helped cheer her up. I got her a snack and then she was able to settle in and go to sleep. (at least so far she hasn't gotten up again and it's been about an hour since I left her room).

So far since school has started (my post: Another School year, Another migraine) I have been able to get on top of a few things. We were able to get the bus scheduled at the right time on the right days ... although we have had to cancel every single day except today! lol... But Jess has a very nice bus driver who drove her last year and she just adores Jess. The monitor is very nice too.

Got the oxygen all set up at the school... again, she's only used it twice, but at least it's there.

We've been to see Jessica's new primary care doctor several times and we still like her. :-)

We will meet Jessica's new case manager next week. I don't know how much experience she has but I got the feeling while talking to her that I have way more experience than she does... I guess we'll get her trained. ;-)

I submitted the appeal to PHS for their decision to deny mental health services to Jessica. I still need to contact whatever doctors, etc to support my appeal.

We have an appointment with SSI to see if Jess qualifies.

We have talked to a couple of lawyers about getting guardianship over Jess and we've been told that the better route for our situation is to get medical power of attorney and durable power of attorney... it will save us time and lots of money. We have the papers and instructions but I still have questions... so I guess we'll be giving the lawyers another call.

Justen's diagnosis of Aspergers has really explained a lot... but we are still having some issues. Nothing huge or major, just enough to make life more interesting.

In the upcoming weeks Jessica has some tests coming up - nothing invasive just labs and sonogram, but it will keep us busy.

Be sure and check out Jessica's blog! I am helping her post something every day. She is so proud of it! Leave her a message there too. She gets soooooo excited to see who has visited it and what they say. :-D

Which picture is NOT Charlie?

Marcus Update

Tonight's the night that my nephew, Marcus, starts his chemo. Jess and I talked to him on the phone for awhile this evening. Marcus is in good spirits and seems to be doing very well. He has to stop eating by a certain time in the evening, take his anti-nausea medicine at another designated time and then one hour later take his 4 chemo pills. If he gets to feeling sick later in the night he is allowed to take the anti-nausea meds every 6 hours or so. We are praying for a peaceful and uneventful night for him.

Tomorrow my sister, Karen, will take him to the LDS hospital in Salt Lake City for his radiation. They made a mask for him to wear during the radiation. Apparently Marcus's doctor is also an artist and asked Marcus what he wanted designed on his mask... Marcus said GARFIELD! So he is anxious to see what his mask looks like tomorrow. I bet it will look great. I asked him to take some pictures - I'd like to see what it looks like too.

Here's the plan:
Marcus will take his anti-nausea meds and chemo meds every night for 6 weeks. He will go to SLC for radiation 5 days a week (Monday - Friday) for 6 weeks. They will check his bloodcount frequently and make sure he is tolerating the treatments. After the 6-week treatment plan they will wait for a month and then to an MRI. The reason for waiting a month is that the radiation can cause swelling on the brain and they want to give him time for that swelling to go down to get a good reading with the MRI.

Marcus told me that he is going to take 3 classes at school in the morning every day before going to Salt Lake for the radiation. He has been out of school for two weeks and he MISSES IT! Amazing... a 15yr old young man wanting to go to school? hehe... He's a great kid!

I spoke to my sister right before Marcus was to take his chemo pills and I can tell that she is quite worried... and who can blame her? I just wish I could be there to.... well, there's not much I could do, but hold her and maybe help her with the driving? Even though we are miles apart, she knows I'm there with her in spirit and I'm just a phone call away. I think that once they get into a routine it will be ok. I hope that Marcus tolerates the treatments and does well. I'm sure he'll kick the cancer's butt!

I set up a carepage for Marcus at www.carepages.com - carepage name: marcusrussell
He went there today and posted a couple of comments. I talked to him about being a manager of his own carepage so I set him and his mom to be managers and they can update as they like. Feel free to visit his carepage and leave him some messages.

I have added both Jessica's blog and Marcus's carepage to my links so you can visit them anytime you like.

I'll update when I hear more. Thanks everyone!

Jessica has her own blog!

Jessica has been wanting me to put all of her stuff on my blog so I just decided to help her get her own blog. You can see it at: http://jessiesfavorites.blogspot.com/ Be sure and leave some fun messages for her! ;-)

Jessica's Letter to Santa

Jessica wanted to get a jump on the holiday season and is already watching "The Santa Clause" movies with Tim Allen. She can't wait to see the newest movie when it comes out November 3rd. She says that she sure hope that Bernard is in the new movie or she says she will cry. lol She has a HUGE crush on Bernard... and yes, she wanted me to tell you that! She also gave me permission to scan and post her letter to Sant here. So here it is!

Who in the World???

Any guesses as to who this guy is? Some questions you might want to ask yourselves are: Was this picture taken before the world had color? or just before they had color film? Or was this picture taken recently with black & white film and a cheapy camera? If you came accross this guy would you ever go near him again? hehehe...

Since my last several posts have been quite serious and kind of discouraging, I thought it would be fun to have a little contest. So please, if you have ANY guesses, post them! Whoever guesses the right answer FIRST wins a prize! (to be determined at a later time by a group of judges) And as another disclaimer... I'm quite sure that the person in the photo does NOT know that I put it here (at least not yet)... but probably won't sue me over it. ;)

Let the games begin!

Update on my nephew, Marcus

First I want to thank you all for your kind emails and loving support. It has been so hard for me to be so far away from my sister and her family during this difficult time for them. I have told them about all of your prayers and emails and they are touched. I'm sending their gratitude as well.

Now for the update:
The news is not good. Marcus has annaplastic astrocytoma stage 3 cancer. The chance of surviving 5 years is only 20% - 30%. Marcus will have chemotherapy and radiation 5 days a week for at least 6 weeks. He will also have daily MRI's and bloodwork done. They expect he will need blood transfusions periodically so they are prepared for that. My sister and Marcus will have to drive to Salt Lake City and back daily (over an hour drive one way) or stay somewhere over night. They will be working out the details next week. I'm sure that after the initial 6 weeks they will evaluate his progress and decide what the next step will be.

So that's the bad news... which was even worse than we had expected. BUT, Marcus is otherwise healthy and strong. He bounced back from his surgery SO WELL! The doctors are all saying that is a great sign. He has a great attitude and is ready fight this thing! He told Jessica that she helped him to be brave. Jessica told him, "If I can do it, you can do it!" :) Marcus is headed home today just 4 days after brain surgery. AMAZING. Another positive thing is that he has the same 'stubborn genes' that Jessica does. (of course neither my sister nor I are stubborn... hehe)

Thank you all for your continued thoughts and prayers. If any of you want to send me an email to pass on to them, I'll be happy to do so. I also appreciate your continued support. My email address is fancydancy@cox.net

Marcus update 10-03-06 at 10:30PM

I was able to talk to my sister this evening. Marcus came out of surgery after about 5 hours. He is extubated and doing pretty well. He is responding to them but they will know more when he wakes up tomorrow. The results of the biopsy will be in by Friday but the doctors are quite sure it IS cancer. My sister and her husband are able to stay at the hospital so that is good. Tomorrow evening my brother-in-law is going to pick up his sister at the airport and take her home. She has offered to stay at their house and take care of the younger boys. What a sweetheart she is!

We are amazed at how quickly the doctors got Marcus into the hospital and into surgery! Two doctors have said that it is very agressive tumor so that makes us nervous, but they think they got it all. Of course we are praying for a full recovery and that the tumor doesn't return or show up someplace else.... One day at a time.... that's how we will beat this thing.

Thank you all for so many emails of support and prayers. I told my sister about them and she is very touched. She is going to tell Marcus tomorrow when he wakes up more. It's so wonderful to have so many people who care.

I will update here as I can.

Update on my nephew

UPDATE:
It is now 12:15pm (AZ time) and Marcus just went into surgery. It was decided last night that he should go in right away. He had another MRI early this morning and just now went into surgery. They will remove the tumor and then do a biopsy.

I got to talk to Marcus last night. He seemed to be handling everything pretty well. He also talked to Jessica. She told him that she knows how he feels. Then she reminded him of just a few months ago when she was in the hospital, Marcus came to our hospital to visit her. It just happened that my sister and her family were in town for 2 days while Jess was in the hospital so they went to visit her there. I also got to talk to my sister and she was doing ok. Fortunately a family that they know from church was able to take the other 3 boys to their home and are taking good care of them. I believe that my brother-in-law's sister is going to fly over there to help them out. I was told that the surgery could take anywhere between 2 - 6 hours.

Thank you for your continued love and support.

Prayers for my Nephew

I just don't even know how to start this post. I am numb... My sister's 15 year old son, Marcus, has been having some problems and had an MRI today. He has a brain tumor. They are admitting him to the hospital to do more testing and probably surgery within a couple of days. We don't know if it's malignant - but probably so. My sister and her family live several states away and I wish I could just drop everything here and go be with them. They have 3 sons who are younger than Marcus and they sure could use the help, I'm sure. I just hope and pray the doctors can do what's best for marcus and that he comes through this ok. My sister and brother-in-law could also use some prayers. I'll never forget the day Jessica was diagnose with her CHD and how our lives were turned up-side-down over night... and forever. Now it's my younger sister who is having to find the strength and her family who's world is coming crashing down around them. At least Jessica was just a tiny baby when she was first diagnosed and then "lived" at the hospital. Marcus is 15 years old and has been very active and was in marching band. I pray for comfort and peace for him, too. To make everything more stressful, we have a cousin who died several years ago from a malignant brain tumor at just about the same age that Marcus is now. We of course miss our cousin and are hoping and praying that Marcus's outcome is much better.

Thanks for any encouraging words. Jessica freaked out when she found out that her cousin had to have an MRI.... so right now I am only telling the kids that he has to go back into the hospital for more tests. No sense in both of us being up crying all night tonight, right? When surgery is scheduled, I'll tell the kids and we can all pray together.

Jessica's PC visit (that would be Pediatric Cardiologist - not personal computer)

In my last post I mentioned that Karl took Jess and I to see the PC (pediatric cardiologist). It was quite a good visit. Jess was happy to see Dr. Donnerstein again as well as the other staff. Jess had an echocardiogram and did quite well with it. Afterwards we visited with Dr. Donnerstein in his office. He says that she is improving. Last time he saw her, her liver was a little enlarged... now it's about normal. Her hepatic veins had looked a bit engorged the last visit but have improved. Her feet and legs are only slightly puffy but nothing to worry about. She is doing quite well and her congestive heart failure is in control! YAY! In fact, he said that she seems to look better and better every time he sees her. I said, "except for that one time you slapped her into the hospital in June." He joked, "That was only to be mean." Of course Jess teasingly got after him about that. Dr. Donnerstein said that she seems to be improving ... and there's no medical reason for it. He recalled that just two years ago she didn't have enough energy to even get out of her wheelchair to get onto the exam table. That was when Jess was having hemoptysis (coughing up blood) practically daily. There is no proof that the morphine therapy is what is preventing the lung bleeds... but there's no other medical explanation... and I'm not complaining! We are continuing the morphine and just keep doing what we have been doing! Of course all the prayers from all of you just happen to coincide with her improvement... *smile*

I brought up something that I have been a bit worried about. From time to time Jess says that she sees "black and white" or "old-fashioned" colors in one eye only. I thought it was only her left eye but she said that it changes sides. Sometimes she has a headache and sometimes she doesn't. Dr. Donnerstein suggested that we see a neurologist. It could either be migraines or TIAs Transient Ischemic Attacks... tiny bloodclots that go through the blood vessels in the brain. They don't leave a lasting effect but can cause symptoms during the time they are happening. The problem is, in order to treat TIAs, they usually have to give the patient blood thinners. Jess has the lung bleed issues so she wouldn't be able to receive treatment - IF that's what the problem is. On the other hand, she might be able to receive treatment for migraines. I looked up TIAs and they are scary! They can be a warning that a stroke could be next. Please pray that whatever is happening with Jess is treatable. Poor kid goes through so much already.

One more thing... Jess has to go see a GYN this Tuesday - she's having "female" problems. She has never been to this type of doctor and I'm hoping she deals with it ok. Also, I talked to the GYN on the phone (she sounds very concerned and compassionate about Jessica's situation) and she said that after the exam we may want to talk about hormonal treatments... I mentioned this to the PC as well and he said he would be nervous about Jess taking any hormones but would be happy to talk to the other doctor any time. Apparently certain hormones can contribute to thickening of the blood and Jessica's blood is already too thick due to lack of oxygen - but that hasn't stopped her from having bleeding issues. UGH! Wish us luck!

Updates: Piano & Gazebo

The old upright piano. As you can see it's not very pretty. I should have thought to take a picture of the keys... they were kind of icky too.

Now the NEW Piano! Very purdy.... And it sounds great too! This piano was made in 1956 and is a Baldwin Acrosonic spinet piano. Most spinet pianos are not only shorter than regular ones but the keys (on the inside of the cabinent) are usually cut a bit short in order to give the illusion of being compact. The problem with cutting the keys short is that it takes away from the sound. My Acrosonic spinet does not have shortened keys and it sounds quite good. It sounds more like a taller piano - which would have cost more. So we are quite happy with our new "baby".



Miss Jess wanted her picture taken sitting at the piano and holding my Beethoven book. She really wants to learn to play so I am in the process of finding a teacher for her. I already gave her one short lesson and she was so happy to be able to show her grandparents where all the "C"'s are. Of course she needed my help since her memory is not that great. (lack of oxygen and all...) piano lessons could prove to be quite interesting... especially since her fingers are quite clubbed (again, due to lack of oxygen). But you know Jess! Where there's a will there's a way! :)





Remember my new gazebo? Well, it is now the Oasis I have always dreamed of! Karl and I have been looking for the "perfect" fountain to add to our gazebo. We have been out pricing them and just when we thought we had found the right one, we found that it was cheaply built and quite pricey. Nope. Not gonna fall for that. So we kept looking. Last week Karl dropped Jess and I off at the PC appointment (that's pediatric cardiologist- not personal computer)and he (Karl - not the PC) went out looking at some more fountains. Since Jess is a young lady and needed an echocardiogram, daddy decided to go out and ended up buying a fountain! Target just happened to have put the one fountain that we liked on clearance - $75 off!


Here are some night views. Karl put up the lights. Very nice!

Happy Birthday to ME! :)

I had a great birthday yesterday. Yes, I had to do a bunch of "mom" stuff but I did get to go out to dinner with my hubby. The restaurant gave me a free piece of pie, too. ;)

Karl has been asking me what he could get for me for my birthday and after investigating everything.... we went and bought a PIANO!! ;) It will be here tomorrow so I will have to post a picture of it then. I used to play the piano every day... back in the good 'ol days. I took piano lessons for many years while growing up then life kind of got in the way. My dad bought an old upright piano for me before Jessica was born and I intended to teach piano lessons to help us out financially but after Jess came along and we "lived" in the hospital and barely managed to get through one crisis after another, the idea of teaching piano lessons fell by the wayside. With Karl being a full-time student and all we were going through we kept saying that eventually we would spend the time and money to refurbish the old piano. The keys are real ivory and breaking, many keys stick, the sound is pretty bad, etc, so it didn't get played much... then not at all. I forgot to mention that the lady we bought our piano from had refinished it back in the '50s and put an "antique" finish on it. LOL... it's quite ugly.. and has been our TV stand for the last several years. lol. I'll have to post a picture of our old piano and then our new piano after the new one arrives. :)

Thank you everyone for the birthday wishes! I have to say that this birthday was much better than two years ago when I turned the BIG FOUR-OH! Jess had just been admitted into hospice, she was having lung bleeds almost daily and for my 40th birthday we bought me a recliner to have in Jessica's bedroom so I could be in there day and night while she was dying. And she was dying.

How amazing that Jessica is doing so much better and that she has been OUT of hospice for a year now. A miracle. Nothing less.

Today be Pirate Day! Yaaarrrr!!!!

For those o' you that don't know, today be "Talk like a pirate day!" So get your Captain hats out, swab t' decks and walk t' plank me hearties!

And in true pirate fashion, I done stole yar post from Jo.




Today also be me sister, Karen's birthday! Have a good day sis!

Our friends Zurik and Zoe

This is our little buddy Zurik. Isn't he a sweetheart?



Zurik was admitted to the hospital recently and was diagnosed with Type 1 juvenile diabetes. He was pretty sick but is doing much better! We are so glad that he is back to his normal giggly self. He is almost 2 yrs old. His mom, Tammy, says that he is dealing with the blood checks and insulin shots VERY WELL! What a trooper!

Zurik is the 2nd child of Tammy and Jaime. We met this family at our local heart support group, Heartlight, when Zoe was just a baby. This is Zoe:


Zoe was born with many complex heart and other defects. She is my hero. She went through so many surgeries, procedures and therapies. I remember watching her learn to walk. She had a toddler size walker and she was soooooo determined to go where ever she wanted to. Jessica and I would frequently hang out with Zoe and her wonderful family at the Heartlight events while the other kids ran around and played. Jessica and Zoe had so much in common - heart problems, multiple surgeries, strokes and most of all the love of life and determination to do whatever it was that they wanted to do!

Zoe earned her wings on Sep 5, 2004... just 10 weeks before Zurik was born. She will forever be in our hearts. She touched our lives in so many ways - as has her family.

A sweet memory

I took Brandon and Austin to Walmart this evening to buy them some t-shirts. On the way home the boys were making up silly rhymes. All of a sudden I had a memory of myself as a young girl and my family was visiting my dad's Aunt Ada and Uncle Melvin. I was just learning to write simple words at that time and I had written a little poem and showed it to Aunt Ada. I remember her praising it and telling me I was quite the poet and what a good writer I was. I remember how good she made me feel. Looking back I know the poem was such a simple one but I had taken quite a bit of time to write it. The last time I saw Uncle Melvin and Aunt Ada was when Jessica was just about to turn 3 yrs old and was awaiting her second heart surgery (which turned out to be very difficult as Jess suffered many complications). I have a video of her signing and talking and calling Aunt Ada: Aunt Wada. Justen was 5yrs old and he was counting all the way up to 100... he got mixed up about half way through and had to start all over again! LOL! Aunt Ada died quite a few years ago and Uncle Melvin died about a year or so ago. They were such special people and I am glad I had such a sweet memory come back to me. I also remember being very young and calling Aunt Ada "grandma". She would say, "I'm not your grandma, but you can call me grandma.... afterall, I do look like your grandma." And she did. To me,she looked like my Mom's mom, Grandma Horne. Short, kind face and white hair.

A long awaited update... well, not quite sure how many of you have waited, nor how long you waited, but here it is:

I have been accused of having too much time on my hands so I figured I should update - since I have nothing else to do. ;-P

Let's see.... after getting to bed at a mere 4:00am this morning, I was up again at 8:00 to call and cancel an appointment for Jessica. That's right, she had a bad night - yet again. I was able to go back to bed for awhile. Poor Miss Jess was coughing more today and needed an extra breathing treatment. She was quite tired most of the day but perked up in the evening. It's 12:20 am and she just got up. She really wants to go to school tomorrow but I seriously doubt it will happen. If she can get up and wants to go, then by all means, I will help her go, but she wasn't feeling that great today. School started on August 15th and she has only been to school twice.

Today I found papers for Jessica to sign to give me the legal medical power of attorney. We need to find two witnesses who are not in any way related to us or to Jessica's doctor, or an employer of her doctor or could in any way benefit financially from her "estate". lol... I don't see people lining up at our door wanting her barbies, coloring books and video games.... well, maybe the video games. :-P We also need to have the documents notorized. I need to get this done ASAP so that I can file an appeal concerning PHS denying to continue to provide mental health care for Jess. Maybe they will provide MY mental health when I'm in a padded cell from having to deal with all this stuff? Anyway, I still don't know how to go about getting legal guardianship without spending thousands of dollars, so I guess the medical power of attorney is better than having nothing at all. I need to call SSI and find out if they will require us to have guardianship before we help Jess apply for it. I doubt it but I think it would be better that way. Hey, I just had a lightbulb momment... maybe Jess can get on SSI then her earnings can pay for the lawyer to help us get guardianship? Is that legal? *gulp* Having her parents as her guardians is in her best interest since she doesn't understand more than an 8 year old would.... about anything. Well, I'm sure we'll figure it out somehow...On a lighter note, Karl finished cleaning out the store room off the carport. YAY! Now I can move all my junk - erm.... stuff - out of the house and have a more organized home. That's the plan anyway.... I did whittle down a huge stack of stuff off of my painting table. I used to paint baskets as a job and I have a table in the corner of the livingroom where I have all my paints, brushes, books and an area to paint. Well, I stopped painting 2 years ago when Jess went into hospice and that area has just gotten all kinds of stuff piled on there. I will be glad to get that area all cleaned up and maybe even paint a little again. This time for FUN! On the left are some pictures of baskets that I painted. Mary Friedrichs and her daughter, Misty, hand-weave the baskets and take them all over the SouthWest to shows to sell. Mary would pay me to do the painting. I really enjoyed it but after a few years it wasn't as much fun to paint... it became a "job" and I got a bit burned out. When Jess was placed into hospice I just knew that my time had come to retire from the basket painting business with Jess needing so much of my time and attention. (She still does - it's now 1:33am and I just put Jess back to bed for the 3rd time.)

I also painted some birdhouses and other fun stuff. Karl has made a lot of things out of wood for me to paint including the bench that I have pictured here and of course I painted the pansies on it. I have been so busy running my scrapbooking business and making my own albums that I haven't paid much attention to painting. I am starting to miss it.

Next week is my birthday and I have people guessing how old I will be. It doesn't really matter to me since I FEEL like I should be in my 60's (arthritis, fibromyalgia and crankiness catching up to me - especially with such little sleep at night). So if you want, feel free to guess my age. And yes, I expect a lot of nasty guesses especially from Dan. :-P But here's my logic: Dan's birthday (and he will be an oooooooooold 30) is on Sep 17. My birthday is on Sep 20... so Dan is 3 days older than me. So neener neener.

My sister, Karen, will be almost as old as me on Sep 19th. hehe... Happy birthday sis! Wish we lived closser so we could celebrate our birthdays together like we used to! :-)

Creative Memories swaps

Here is a picture of some CM swaps. It is for a yahoo group called CMOnly Swaps. For this group I had to make 8 of each doll using the Sizzix dies and CM paper. These were a lot of work but so much fun! Now remember, there are 8 of each doll. When I send them in, I will get one of my own back and 7 different ones that other people have made. I can't wait to send them in and see what I get back! This is my first swap ever!



And I blame Samantha for getting me involved in swapping. LOL!

Update on our neighbor

Our good friend, Linda, passed away early this morning. She had taken a turn for the worse and did not ever receive her chemo treatment. Thank you all for your loving thoughts and prayers. Jessica is taking the news pretty hard. I'm sure we will be up late tonight as she tries to grasp what has happened. We are going to our local Tu Nidito support group meeting this evening so hopefully she will be able to talk to one of the trained volunteers or social workers there too.

Jessica is quite the author and artist

Most of you know that Jessica has invented her own story regarding Harry Potter. Mary Potter is Harry Potter's long lost twin sister. Mary is in the Slytherin house and is in love with Draco Malfoy. ooooooo..... Harry and Mary get a long really well and Mary and Draco get along, but there is still the rivalry between Harry and Draco. Very interesting...

Here is a picture that Jessica drew of Mary Potter's room at Slytherin.

Jessica's grocery list

This was just too cute! I just had to share Jessica's grocery list. I'm getting ready to run some errands and Jess wanted to make a grocery list for me. As you can see she also drew the pictures so I would know exactly what she wanter. hehe... unfortunately she drew the ice cream cone up-side-down. She's such a little girl.... she makes me smile.

You can see that she is trying out fancy hand writting.

Our New Patio - and gazebo!

I'm proud to present our new patio and gazebo! We used to have an old, wimpy gazebo that the wind would blow around. I wish I had taken a picture of it before Karl took it down... but it was a shady place for us to go sit under - although it didn't have a patio, just dirt. So Karl took down the old one and leveled out the ground. We bought paver stones and Karl went to work! Karl and I found a great deal on a gazebo and outdoor dining set so we bought them. Here are the during and after pictures. Again, I wish I had gotten the "before" picture... but oh well. We are THRILLED with our new outdoor living area!


The patio part is coming along...




Karl and Justen working hard

Our lovely new living area

Another school year... another migraine

So.... the school year begins and the fun starts... or not.

To start off with, Jessica's bus schedule is all messed up. She is supposed to have a pick-up time of 10:15am and come home at 1:30pm on Monday and Thursday. Last week there was a bus at our house at 7:10 every single morning. Come to find out the person in charge of the scheduling, George, died during the summer - not sure how and of course I'm sorry for the loss... but there's more to the story... Transportation got a new computer system during the summer so all of George's files, schedules, etc. are gone. Kaput.... as if George took everything with him. So now the new guy needs Jessica's emergency plan, copy of her DNR, schedule from the school (can't take my word for it) all before they can send a bus for her. Of course it needs to be air conditioned and wheelchair capable. Fun.

I called the medical supply company on Thursday of last week and requested that they deliver the usual oxygen supplies to Jessica's high school. Of course I told them the list (oxygen concentrator, two 25ft tubing, two sivel connectors, 3 humidifier jars, 3 pediatric nasal canula, 2 E tanks with a cart and regulator). I was told it would be delivered the next day. Monday comes around and I take Jess to school (see reference above about no bus) and come to find out... no oxygen either! I brought extra E tanks for Jess and make sure she had enough for the 3 hours. I picked up the paperwork for her meds and now I need to remember to fill them out and get it back to the nurse's office on Thursday. I was so busy running kids around yesterday that I didn't get a chance to call the medical supply company so I did that today. They couldn't tell me why it wasn't delivered on Friday - or Monday - or today... but promised it would all be there tomorrow. The guy I talked to in dispatch talked to me as if I were an idoit - started to describe to ME what an E-tank was... I told him I know what an E tank was... I wanted to know how many they were delivering and how many hum jars and peds nasal canula. ha. They had forgotten about the two 25ft tubing... Jess sure wouldn't get far on a 7ft nasal canula. gee... (she parks her wheelchair and walks around in the classroom).

Jessica's pediatrician is retiring so we recently had to get a new primary care doctor. Dr Curtiss has been Jessica's PCP for many years and we hate to see him go... of course he deserves to retire... anyone would after being Jessica's doctor for all these years. haha... Anyway, Dr. Curtiss helped us find an internist since Jess is now 18yrs old. We saw her a couple of weeks ago and she seems pretty good.... only when I left a note for her to write a script for morphine she wrote it for 2.5mls - 5mls twice daily... when it should have been 2.5mls - 5mls every 2 hours as needed... so we had to have it rewritten so the insurance company would cover the 600mls Jess needs every month. It's taken us from Fri until today to get it taken care of. Good thing I expected it to take awhile and I made sure we had plenty of morphine left when I requested the script.

Jessica's case manager called me today and told me that she is moving to Florida and we will get a new manager starting Monday. Oh, I really hate to see her leave... she has been one of the best case managers that Jessica has ever had... and considering we are talking about 18 years worth of them, we've seen quite a few come and go. Keep your fingers crossed that the new one is good too!

Also, PHS is trying to deny mental health coverage for Jess since she just turned 18 yrs old. Excuse me? We have an 18 yr old with all the hormones but the mental capabilities of an 8 yr old who knows that she is getting sicker. She knows she could die and she realizes that she is missing out on a lot of things the other kids her "age" are doing. I am up with her until 2:30 - 6:30 AM at least 3 times a week because she is stressed out and can't sleep... sometimes crying and even trying to hurt herself. They want to stop coverage NOW??? More phone calls and paperwork ahead of me. Speaking of hormones... Jessica's cycle is messed up so she has to go see a GYN in a couple of weeks... yet another new doctor, for new problems.

Speaking of doctors and new problems, (well, 'new' as in 'within the last year or so').... Jess sees the GI doctor again this Thursday. She is still having some pain but we seem to have it more under control than a couple of months ago. I think the key is to keep her bowels moving but not too fast. What's the magic potion? I think it's 1 1/2 of the usual dose of mirilax on most days. We'll see if that changes.

Still working on the Legal Guardianship issue. All I get is dead-ends or $$ when trying to find out how to go about this. Wish me luck! Or find me a lawyer who will work for free... or even scrapbooking supplies! ;)

Justen finally got the official diagnosis of Aspergers. That's a whole 'nother set of issues - but at least we finally know what is going on with him and hopefully we can find some support for it. We are just hoping he doesn't lose his job because he offends someone and doesn't even know it. OY! Oh yeah.... he dropped a course last semester and didn't tell me (or his dad) and now he doesn't qualify for a federal grant to pay for his schooling - not enough credit hours. We can't pay for it so he is just going to have to either go part-time or not at all. At least he has a job.. part-time at Frys grocery store.

Life has been BUSY

Wow, it's been awhile since I posted here... or anywhere, really. "Life has been very busy" would be an understatement. I can't believe school starts again on Tuesday. I have been taking kids school shopping, Jess to doctor's appointments, helping some dear friends of ours with a yard sale (see the other post regarding prayers being needed) and running around making CM deliveries and getting ready for a CM workshop which was last night. I really enjoy Creative Memories and was so excited - I had 11 customers come to the workshop! woo-hoo!!! We had a great time but of course hauling all my CM product to the workshop and back home that same night wears me out.

Add to my to-do list:
a) find a better way to organize my CM product so I am not taking a ton of product that I don't need to.
b) organize my new CM cart and tools tote so that's all I have to take for my own use at a workshop.

Creative Memories just has it's yearly Showcase and they came out with a lot of new product! I am excited about it all........ gotta have it! ;-) Hey, at least as CM consultant I can support my own habit.

Prayers for our friends

My neighbor's mother is struggling with cancer. It is throughout her lungs and brain. She probably doesn't have long to live and to help with the pain, she has gone through radiation. The doctors have said that she could try chemo in order to help with pain and other things but they have to come up with over $4000 before they can even start the chemo! This very sweet lady is on Medicare and that's her co-pay! Unbelievable! They just found out about the $4000 a few days ago so we have been helping them with a yard sale - all money raised will go towards paying for the chemo. I talked to one of the family members today and Linda had such a bad night, they had to admit her into a hospice unit to get the pain under control. They almost lost her last night. Please pray for Linda and her family. We've known Linda and her daughter, Trina, for quite a few years - they taught Jessica's Sunday School class a few years ago. Trina and her family moved in across the street from us a few months ago and it's been nice to have them so close. Jessica is having a hard time dealing with all of this too. She donated some things for the yard sale and was so happy when some of it sold today. Karl and I donated as much as we could come up with on the spur of the moment and the boys donated a huge amount of Imaginex toys. They will be having another yard sale next weekend so I'll be busy looking for more things to add to the cause.

Please keep Linda and her family in your thoughts and prayers. Trina is having a rough time of it - she said that her mom is her best friend.

Thanks!

Morbid???

Jessica has been talking about death a lot lately, which is ok, she goes through phases of talking about it.... but what is weird is that she apparently saw some show that went into detail about what happens to a body after it dies. I forgot which show it was but it's not really something I would normally let her watch. I dont know exactly when she saw it because I try to keep tabs on everything my kids watch... anyway, I can't do anything about that now, but what is even more weird is that she has fixated on that subject. She keeps talking about it and says things like, "I can't believe that after just a few years after you die, you lose your eyes and your ears..." and she will ask me why our bones don't go away. I explained that the soft parts dry up and go away. She was holding her bunny (Mary) last night and asked me if Mary's ears would go away because they are soft... and what about her nose? Will it go away too? Oh gee!

We are LDS (Mormons) and we believe in life after death. We believe we will someday be resurrected as Christ was and have perfect bodies ... so it doesn't really matter what happens to our bodies when we are in heaven, they will be perfect when we need them again. I've tried reminding her about our beliefs but for some reason she needs to talk this out. I tell ya, she has really come up with some interesting things to talk about but this takes the cake! She has the mind of a young child and she has to process anything new by talking about it - a lot.

For Crying Out Loud

Literally.... Poor Jess got so offended by something someone said that she was crying buckets of tears tonight. She even started that type of crying where she was doing the "catch-up" breathing... dont know how else to put it. She started coughing from the crying and it started sounding like the kind of cough she does when she coughs up blood..... fortunately no blood tonight, *whew*. Karl and I took turns sitting with her and helping her calm down. She takes everything to heart.

The person who offended her has no idea that he/she said anything wrong. This person doesn't realize how sensitive Jess is and how much she truly is a little girl. Hopefully we can get things straightened out tomorrow. I know this person had no intentions of hurting Jessica's feelings, I think they just got foot-in-mouth syndrome.

It's about 1:40am and I just got Miss Jess back into bed. Hopefully she will be able to sleep now. She has her favorite two barbies in her bed and is watching Barbie as the Princess and the Pauper. She really is a little, innocent girl.