Finally Home!

FINALLY......we get to see daddy!

Jared with Dr. Jensen..his Neuro Surgeon...great guy!
Jared gets some visitors....Brooklyn & Halle, with cousins Zack & Chelsea

We finally got to bring Jared home today...yea! Yesterday was kinda rough though, he slept alot, and he was on alot of pain meds that made him pretty groggy, but he was transfered out of critial care and into the regular neuro care, so that was good. The doctors also wanted him get another MRI. They wanted to put the new MRI on top of the MRI from 2 weeks ago to make sure that the right area was bioposied (which it was), so that was also good. The girls were dying to see their daddy, but with the bad storm rolling in, I left around 5:00 last night and decited I would try and take the kids back up today.
We got to the hospital today and they were talking about sending him home. It was great news, but I could tell Jared was still not quite ready to leave. We had him try walking the halls for a bit, but he got tired really fast, and he couldnt stand or walk without help. So he slept for a couple of hours and we tried walking again. He did alot better the second time, but still needed help. So they decided to send him home with a walker. We waited until about 4:30 and Dr. Jensen his neuro surgeon came in to talk with us.
He met with the tumor board earlier, and also had the pathology results. It looks like Jareds tumor is still a grade 2, thats why it looks alot like brain tissue, instead of tumor tissue. Grade 2 means slow growing, but because he has new growth from six months ago, they still want to do some sort of treatment either chemo or radiation or both.
The type of tumor Jared has is called a Oligodendroglioma - (al.e.go.den.dro.glee.o.ma) Its a low grade, slow growing, large, well defined tumor, and people can survive for many years after onset.
There is still one more test result to come back. Its the 1P19Q deletion test. This test will take up to a week to get results from. So that will make our appointment with dr. Coleman, the Neuro oncologist, a week from tuesday, on December 7th. The 1P19Q deletion will test his 19th cromozone to determine what treatment will be more effective, chemo or radiaion.
So its good news because its a low grade, slow growing tumor. I feel like we are soo blessed with todays modern medicine. Even 11 years ago when Jared was first diagnosed, much of this information and testing wasnt done.
Another things he struggles with is his short term memory. He has a hard time remembering what he did just a few minutes ago. The doctor said he has swelling from his brain getting moved around and as the swelling goes down, his memory should get better..lets hope!
After dr Jensen left I got him dressed and we left the hospital around 7:00. He seems to be doing better as the day goes by. He hasnt had any pain meds since early this morning, so that helps to keep him from feeling groggy. Were just taking in easy tonight and over the next few days, hopefully he will continue to improve.
Hope everyone has a great Thanksgiving tomorrow! I know we have alot to be thankful for...
Thanks again for all your love and support!

Post Surgery....be prepared, its GROSS!

Jared just before surgery....calm as a cucumber, his blood pressure was super low!
Yikes...after surgery with staples in his head!
Still very groggy...he kept asking the same questions over and over...

Kylie and Steve came to see Jared, they are soo cute - love them!

Well today was the big day! We got down to the U of U hospital around 10:00 and got all checked in. Jared was scheduled for surgery sometime between 11 and 12, but of course there were delays, so by the time they finally wheeled him off it was like 1:45. I was dying! I had butterflies in my stomach but I also had been fasting since the night before, so I was starving. But I didnt want to eat until he left for surgery. It was tough to see him go, praying that he would come out ok...it was a little emotional. The last thing he said was, "make sure my little girls know that their daddy loves them"! Wow that was hard!

My cute sister Kelly came up to stay with me so I didnt have to be alone, I was goo glad, it made the time go by soo much faster, and it kept my mind off of Jared. We also got visits from my cute friend Rochelle Barker, who is a drug rep for Pfizer (she distrubutes Lipitor and Viagra) so she was up visiting some doctors. And also we saw John Speth another neighbor and friend who works for the U of U hospital. I also got lots of phone calls and texing...Its great to have good friends!

Dr. Jensen came to see me around 5:45 to discuss the surgery. He said it went great. They had to do the more invasive procedure, which meant they took out about a 2 inch chunk of Jareds skull. They used the MRI and also the PET & CT scans so they could make sure they were in the most aggressive area.

He first biopsied a peice about a big as the tip of his pinky finger and sent it up to pathology. The pathologist called back and said, this looks like brain tissue, not tumor tissue, so he sent up a few more (total biopsy about the size of the end of his thumb from the knuckle up). They will each have extensive testing done to them. Hopefully the testing is done by wednesday, because the Huntsman tumor board meets every wednesday afternoon, and they will go over the pathology report and discuss whats really going on inside Jareds brain!

He said its only happened a couple of time before, but its like all the preliminary testing is showing a tumor, but when they open him up, they can only find brain tissue. It just dosent add up. But hopefully the tests will show more. Its obviously a good thing, but its still a mystery as to what we are seeing on the MRIs. But after they meet on wednesday, hopefully they will know the best way to treat the tumor.

Just a quick update...

This was Jared with the probes on his head...funny huh!
This is what Jared's scar looks like from the first biopsy back in 1999...

he had me shave his whole head today, normally you cant see it because his hair is soo thick...

Well its Sunday evening, I am sitting in the waiting room while Jared has one final MRI, before his biopsy in the morning. They will put these little probes that look like lifesaver on his head, he will have to keep them on all night. Then when he comes down in the morning for his surgery, they will hook up the probes and with the MRI, they will determine where they need to go in to do the biopsy.
We came down her around 5:00 and dropped the girls and Mitch off at Kylies & Steve's house. They were soo cute to help us out and the girls were soo excited to see their big sissy. My parents along with my sister Kellys family want to come and meet us at Kylie's after to see Jared.
We went down to the Huntsman center on tuesday morning and met with Dr. Coleman, the Neuro oncologist, and had a few more questions answered about chemotherapy. The best chemo to use on the brain is called Temadar, its the best chemo for breaking through the blood brain barrier. The best part is that its a just a pill he would take every day for a minimum of 6 months, with very minimal side effects. He may not even loose his hair.
Then on wednesday morning we met with Dr. Shreve the Radiation doctor. He was soo helpful and helped us to learn more about radiation and how it works. Its alot safer than it was even 10 years ago. They would make a mask of Jareds head, and are able to just radiate the cancer tumor and have minamal effects on the rest of the brain. But the down side is the best way to treat this type of tumor may be to have radiation every day, 5 days a week, for 4-6 weeks...that sounds like soo much, but he said it would be alot smaller dosage given each time.
He also had a PET Scan/CT San on wednesday. They put some sort of radio active chemical in his body (it has a very short half life) and then gave him high doses of glucose. The glucose will seek out the most active tumor cells (cancer lives off of sugars) in his head, where its the fastest growing, and thats where the doctors will do the biopsy, on the most active tumor cells. His treatment for chemo/radiation will all depend on the results of this test and also the biopsy. This will tell the type of tumor as well as what grade his tumor is.
So this last MRI tonight, is more of like a 3-D MRI. They will put little probes on Jared's head (that look kinda like life savers) and Dr. Jensen will hook up the probes again in the morning before his biopsy, and use this MRI to help guide him to the best place in the brain to to the biopsy. He will also use the PET/CT scan to help guide him to the most active cells.
There are two different types of biopsys they could do. One is to just drill a small hole into Jareds head and extract tumor tissue that way, or if the need a bigger surface to look at, they will do a more invasive biopsy and take out a 2 inch peice of his skull and do the biopsy that way. The bigger biopsy is what they did 11 years ago. He has about a 5 inch scar across the top back part of his head, but his hair is soo thick, you cant even see it! Either way, we wont know until right before the surgery which one they will do.
He has to be at the Uof U hospital by 10:00 on monday morning, they've scheduled 4 hours to do the surgery, and he will stay in the hospital anywhere from 2-5 nights, depending on how his recovery goes. We hope is only 2 nights that way we can bring him home for Thanksgiving!
I hope to keep this updated as best as I can over the next several days and weeks.
Thanks soo much for all the love and prayers in our behalf. There is a very calm and sweet spirit in our home, we know the Lord is with us now and we feel his love. We have felt all of your love, prayers and support! Thanks to you all!

Our long journey begins......

As most of you know Jared was diagnosed with an inoperable grade 2 astrocytoma brain tumor almost 11 years ago on December 7th, 1999, after his first seizure. At the time the doctors knew his tumor was low grade/slow growing, and where its located, (the back right lower side of his brain), if they did operate on it, he could become blind or paralyzed, so they chose not to do any kind of treatment to it. His only side effect from the tumor has been several grand-mal seizures over the years, but with his current medication he has gone for over a year and a half, seizure free. We have felt soo grateful and blessed. We have gone to the Huntsman Cancer Center every six months for an MRI and to meet with his Neuro-Oncologist, Dr Coleman. Each time we go we find that his tumor has not changed, and we leave feeling soo blessed and fortunate that we have another six months of good health ahead of us.

His last appointment was this past tuesday, on November 9th. We expected the same results as always, to hear how lucky we are and how Jared is a walking miracle, with no treatment at all. But this time would be different, and forever change us....

When Dr. Coleman brought up the current MRI on his computer screen and alongside his last MRI, we could see how much his tumor has changed, up to this point Jared's tumor was only on the right lower side of his brain, but has now crossed over into the left side of his brain. Its about half again as big as the original tumor. They consider the old part of the tumor as dead or not growing cells, and the new part of his tumor as live or growing cells. They are not sure if its a grade 3 or 4 but they want to do a biopsy on the new cells to determine what grade and what type of tumor it is. There is also a PET Scan they want to do to see where the most active or hot spots of his tumor are. They talked about chemotherapy and radiation, but cant determine the best treatment until after the biopsy and pathology report are done.

Jared was pretty quiet as Dr. Colman talked. I was the only one really asking any questions. I could tell he was in shock. At one point Dr. Coleman left to go get the Neuro-surgeon Dr. Randy Jensen, who Jared has known for the 11 years along with the Licensed Clinical Social Worker, John Conlee who Jared has also know for 11 years. I was glad we were talking with people we knew and trusted. They were able to answer all our questions and reminded Jared that he was a perfect candidate for what we would need to go through. Jared is only 39, he is very healthy and strong, and up to this point, he has never had to have radiation or chemotherapy, so they consider him clean. Also they have a higher sucess rate when a patients tumor changes from a grade 2 to a 3 or 4, than if its a grade 4 when he is first diagnosed.

We will go this next week on tuesday morning to meet with the Neuro-Oncologist, Dr. Coleman and also the Neuro-Surgeon, Dr Jensen. They met with the tumor board last wednesday, so hopefully we will have more questions answered. Then on wednesday we will meet with Dr. Shreeve, the Radiation Oncologist, to discuss and ask questions about radiation and chemotherapy.

We have his biopsy tentatively scheduled for monday the 22nd of November. They arent sure yet what the best biopsy procedure they will do, but we are hopeful it will be the less invasive procedure.

We know that Jared has been so blessed in his life. He is a miracle. At the time of his first diagnosed, he was given two special blessings. One by his dads brother, Uncle Hal, and also by Elder Neal A. Maxwell. In these blessings Jared was promised that he would live to fulfill all he was sent here to do. Jared also has his dad and two brothers on the other side of the veil, who we know are well aware of what Jared is going through. Jared was only 6 when he lost his dad, and his dad was 39 when he died. Jared is now 39 and our baby Halle Jo is 6. Jared knows what its like to grow up without a dad, and doesnt want his little girls to go through the same experience. That is the hardest thing that Jared is facing mentally.

Please pray for Jared...Thanks!

Halloween!

Halloween was great this year...until it started to rain! Me, Brooklyn and Halle all decited to be witches, and Jared (for the first time in 9 years), dressed up too! He was a mexican cowboy with pop guns and all! We had our annual soup dinner in the Rich's circle, followed by Trunk-or-Treating...it was lots of fun, and as you can see we had a big turn out. But by 6 o'clock the rain came and everyone was all wet! By that time most of us cleared out and we brought Brooklyn and Halle home to dry off. We thought for sure they would be ready to go back out in no time, but instead they changed into their jammies and they were done! I made them go back out to a few more houses later (in their jammies) and of course we had to go by Val Bagleys to see his annual Haunted house, which was great!

Fletcher Halloween Party

Here are some pics from our annual Fletcher Halloween party...we had soo much fun, everyone had great costumes...some of the favorites were, Kelly and Shannon as dead ghosts, and Danny, Pam, and Kim as Sister Wives, mom made a great Cleopatra, Steve was a U of U football fan, Kylie and Brenda were both Cheetahs, and Jared and Mitch both had guns!! Mom and Dad always make it soo fun for the kids. Everyone had to guess how many candy corn were in this jar....and me and Kaylynn were both right on with 999! Their were 25 grandkids all dressed up (we were missing 6) , and with the adults...there were 42 of us all together! WOW! Thats alot of noise, but very fun!

Brooklyn's Baptism

Our sweet little Brooklyn was Baptized today! Her birthday was back in June, but she really wanted Kylie & Steve to be there, and beacuse they were in New York for the summer, we waited until September to have her baptism. She was soo excited because her best little friend Grace Prows got to be baptized with her, along with Abby and Cooper from our ward. It was such a great day, they were all soo cute! All of our family was there, which made her day even better.

Ever since the day she was born, Jared would always tell me I hope I live long enough to Baptize my little Brooklyn. Ive never seen a dad more proud and excited for his little girl. Brooklyn was soo ready, she talked about it all the time. Kylie gave a talk on the Holy Ghost and Brooklyn listenend intently to every word she said. We are soo proud of her!

Family Pics....

Natalie Steed took our Family's pictures back in May before Kylie & Steve left for New York...They turned out soo great and we had alot of fun! She took us to Ogden by the train depot and around town. Jared thanks for always being such a great sport! Love you!

A prayer for Chelsea....

Shannon trying to catch a snooze on his makeshift bed! This was where he and Kelly took turns sleeping each night...
The girls were soo excited to finally get to see Chelsea...somehow just seeing her made them feel better and Chelsea too! Laughter really is the best medicine...

Kelly was trying to help keep Chelsea pre occupied while the nurses changed the dressing on the stint in her arm...they had to scrub it...there were lots of tears! But Chelsea was very brave! The rest of us went out of the room while they cleaned it, but Brooklyn stayed in to try and help keep Chelsea's mind on the Eye Spy book. Brooklyn is soo tender hearted!

Mom came up and brought Zack, he was really having a hard time with Chelsea being gone. He is such a great big brother to her, she is lucky to have him. Mom brought Chelsea a present, it made her smile. But then Mom makes everyone smile!
When we came to visit Chelsea she felt well enough to go for a ride to the children's play center, Wow was it fun! The nurse even let Brooklyn & Halle ride in a wagon...they thought that was pretty cool! Chelsea got the best ride of all in her little wheel chair, while Kelly and I pulled "skinny" (her machine) alongside us and tried our best not to get all the tubes tangled up in her wheels! In the children's center we played with toys and got to make birthday cakes out of paper, glue and glitter!

As I watched Kelly with Chelsea the thought came to me, "I can do HARD things" I don't know a mother alive that doesn't ache when she sees her sick child and feel so helpless. Kelly has a very tender heart and such a sweet, sweet spirit. It was so hard for me to watch her try to tend to her helpless little girls needs. Kelly was so patient and loving towards Chelsea. I know our trials make us stronger....and as I watched her I realized, we can do HARD things!
Brooklyn & Halle are like sisters to Chelsea so it was very hard for my girls to picture Chelsea in the hospital and wonder if she was ok. They had alot of questions for me, but after we went to visit, they had even more! Like is it scary to ride in a wheelchair? Why do the nurses have to wear those funny masks when they clean Chelsea's stint? What are all those tubes she has hooked to her arms? What do all those machines do? And my favorite, why is her finger glowing red?
My twin sister Kelly's little Chelsea has been soo sick! For about 12 days she had a fever and aches. They would come and go day after day. Kelly took her to her primary care doctor 3 times. Each time the doctors would send her away telling her they couldn't treat it, it just needs to run its course. Finally the last time, they drew 4 vials of blood, and determined her white blood count was really high and her red count was low. (usually meaning she has got some kind of infection in her body). That night was Shannon's youngest brother Lance's wedding Thursday June 24th, Kelly got the news at the reception, just after family pictures and then took Chelsea up to Primary Children's Hospital. She showed up to the hospital looking beautiful in her long black gown and high heels! They had to give her scrubs to wear that first night until Shannon could bring her some normal clothes!
They were amazing there and went to work trying to figure out what she had. After several days she was diagnosed with "Kawasaki disease". The hospital usually only sees about 30 cases of this a year, but each case is different. She had all the symptoms, high fever, aches and pains in her bones and joints, sores on her tongue, peeling skin under her finger nails, swelling in the blood vessels and inflammation that can lead to possible heart attack, and the white of her eyes were blood shot. She also started throwing up blood.
They had to give her 2 IVIG's. Its an immunoglobulin, to help people with auto immune disease. It's human plasma from like 50 different people to help build up the red blood cells in her body, to help fight off the infection.
The first one worked great but the second one had a reaction to her AB+ blood type, so she started going downhill with high fevers again. She lost a lot of blood through all this and also had to get 2 blood transfusions.
She stayed in the hospital for 10 days. So, after being sick at home for 12 days and another 10 days in the hospital, she finally came home yesterday on July 3rd. She still has a slight fever, but she had started eating and drinking again, so the doctors thought she was well enough to come home...Yea! Our prayers were answered, what a blessing! We love you Chelsea and we are soo glad that you are all better! :)

Lagoon with the Fletcher Family!

Each summer dad take our family, and goes to Lagoon for the day! The grand kids look forward to this all summer long! It was a hot day - but as you can see, we found the wet rides...we even got mom and dad to go with us! Some of us swam and others watched the musical shows. It was soo great! What a fun day! We missed Kylie and Steve, they are having a great time in New York!