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.