29 August 2007

Tuesday

We had a follow up meeting with Dr. Hazard and Dr. Glantz. We met for one hour and discussed changing mom’s radiation treatment from whole brain to IMRT (Intensity Modulated Radiation Therapy). IMRT is what Dr. Watson strongly suggested last Friday. So, we had a meeting to discuss this option. The condensed version of the meeting is that Dr. Hazard believes that whole brain radiation for 25 visits followed by 8 treatments of focused radiation is the best course of action. We also stressed the need to help mom feel better than she is feeling. Her condition is declining. Dr. Glantz agreed that we need to find out why mom is so exhausted, anxious and disoriented.

Wednesday
Mom went to Poosh. She also got her blood work done. Her white blood cell count is 20.73, which is high and may indicate an infection. Her platelets are 144, which is a little low but nothing to worry about.

Then we met with Dr. Glantz. He talked to Mom about her anxiety and about her weakness. His opinion is that Mom might have a mild form of hydrocephalous (too much fluid on the brain) which would be the cause of her incontinence, confusion and weakness. She has a CT scan scheduled for tomorrow morning. This is to check only the amount of pressure on the brain due to fluid. If she has hydrocephalous they will simply remove some of the fluid from the Ommaya and it should help to alleviate these symptoms. He will also check the swelling in her brain and has recommended we begin to wean her off the steroids again. The steroids are causing her weakness in her peripheral muscles (i.e. joints in hips and joints in arms) which make it hard for her to stand and walk. He said it is common for steroids to cause this particular type of weakness.

Mom does love to hear from you and see you. She feels “out of the loop” and that stresses her out. She needs more visits and calls. The best time to do this is between 5pm and 7pm. The morning is used up with Poosh and after Poosh she needs a nap. So, please make time to visit or call.

The Christensens

27 August 2007

Love can make people do crazy things. Need I say more?

Dan and Dave have thrown down the gauntlet. Since mom is losing her hair rapidly, Dan and Dave are showing mom their support. I am certain that at least one of us needs to keep our hair in order to converse with medical professionals from time to time. So, I am making that sacrifice. :-)

Today was a hard day for mom. Even though she skipped Poosh, she was exhausted and nauseated for most of the day. She slept a lot and is just weary. She is 12 days into the 33 days of treatment (36% - more than 1/3). Things will most likely get harder from here. We need your prayers more than ever. Please, please remember to ask the Lord to bless mom with strength and comfort.

Tomorrow we have an appointment with the neurology team. Dr. Jensen (the surgeon), Dr. Glantz (the neuro-oncologist), and Dr. Hazard (the radiologist). We will be talking about why we have to find out about treatment options and alternatives on our own instead of them discussing the options with us. We are interested to know what their plan is and why they have chosen it. We want to discuss the pros and cons. We want data. It will be interesting to see if doctors have data. I’ve heard that they are very smart people generally. It should be an interesting meeting. [sorry for the cynicism – my frustration is showing]

Finally, a friend shared the following thought with me.

"Healing blessings come in many ways, each suited to our individual needs, as known to Him [the Lord] who loves us best. Sometimes a 'healing' cures our illness or lifts our burden. But sometimes we are 'healed' by being given strength or understanding or patience to bear the burdens placed upon us."
Dallin H. Oaks – Quorum of the Twelve Apostles

We feel the Lord’s healing blessings.

The Christensens

26 August 2007

Good news! Mom and dad just received their last piece of luggage from their trip home on July 21^st. Ha. Only one month later. The airline lost all of the tags from the bag so they went through it and found one of mom’s prescriptions. That is how they found out who it belonged to. They are glad to have it back.

Let me catch you up on the past few days.

Friday –
After Poosh today mom and dad went to Dan and Heather's home for our family's traditional lunch, grilled tuna. Mom loved it.

In the afternoon, we went to the consultation with Dr. Watson. He is the doctor who uses the Gamma Knife. He does not feel that mom is a candidate for the Gamma Knife but he does feel that the Poosh that mom is receiving is too conservative. He gave us a lot of information to think about. He suggested that he consult with mom’s Poosh doctor to change the strategy. So, mom is going to skip Poosh tomorrow so that we can talk to the doctors.

So, now we are faced with making more decisions. Please pray for us while we make these decisions. It is so difficult to know what we should do.

Saturday -
Cami came and cleaned the house. She did a great job. Mom feels so much happier when things are in order and are clean. Dan and Heather came and visited and worked on the basement too. These things put mom’s mind at ease.

John and Sandy McCormick came to visit and brought home made chicken noodle soup. Mom and dad enjoyed the visit very much. And, Sandy makes a mean chicken noodle soup. :-)

Sunday -
Today we went up the canyon today for mom and dad’s 47^th anniversary. It was wonderful to be together in the mountains. Mom and dad really enjoyed themselves.

23 August 2007

Wednesday Mara took mom to Poosh. Things went well and afterward mom’s long craving for a hamburger led them to McDonalds. Mom was begging for McDonalds. You can double check in Revelations but I am pretty sure that this is one of the signs of the second coming. :-) Mara even brought some cheeseburgers home so that mom could snack on them. They are gone now.

Dawn and Morris Thurston came to visit in the evening. It was so nice to have friends visit. Mom and dad love it. Please consider making time to come by and visit. If you need a place to stay, we are more than happy to help. Mom is definitely up to visitors. It is a very important part of her life.

Thursday Dad took mom to Poosh. The radiologist reported that the X-Ray checked out clean. Nothing abnormal was found in mom’s chest to worry about. This is good news. The pain is subsiding due to some Loritab. We are not sure why there is pain there yet.

Tonight we had a meeting with the siblings to discuss coordinating all the necessary things (food, Poosh, Koosh consultations, mission reunions, glow in the dark landing strips to help mom at night, etc.). We all took assignments and shared our concerns with each other. It is a difficult thing to do since we all have so many emotions and our feelings are tender because of mom. But, it was a good meeting. The Lord is truly blessing us to be understanding and patient with each other and to work together.

Tomorrow after Poosh, mom is going to a consultation with a doctor who uses a Gamma Knife. “The Gamma Knife^® offers a non-invasive alternative for many patients for whom traditional brain surgery is not an option. Gamma Knife^® surgery removes the physical trauma and the majority of risks associated with conventional surgery.” This is something that we hope will be effective on the second tumor that was not removed. We will let you know what we find out.

The Christensens

21 August 2007

Dad took mom to Poosh today. Things went as planned. However, mom has been complaining about her upper ribs on her left side hurting. So dad arranged to have an X-Ray taken today after Poosh. We will know the results tomorrow. We are not sure what to think about this. Dr. Glantz explained to us in the beginning that Gliomas DO NOT spread to other parts of the body. So, this cannot be the cancer spreading. So, we do not know what to think. We will let you know when we know more.

Tonight mom had shish kabob and pilaf and fruit for dinner. She ate well again. The Koosh is causing her to have stomach distress at night. So, we are working to help mom not over eat. :-) :-)

We have set up a family calendar on the internet so that we can better coordinate who gets a turn helping. We have been stepping all over each other because everyone wants a turn taking mom to Poosh or helping at the house or bringing dinner, etc. This will be a good thing. On one of mom’s visits to the doctor, all six kids were there. That is a little overwhelming for the hospital. ;-) More than once, mom and dad have had multiple dinners brought over. So, the calendar will be a good thing. We are so blessed to have the family that we have. Each of us contributes when and where they can. We are so blessed to have each other and mom is bringing us even closer together. What a blessing it is to be able to pause our ridiculously busy lives in order to contemplate and act upon the love that we have for our parents. God sends his tender mercies to us in so many ways.

The Christensens

20 August 2007

Mom had another good weekend. She is very tired but finds time to get around. Mom and dad went to church on Sunday. This is their first time back since their mission. They said that it went very well. Friends in the ward are full of love and hope.

Mom had another successful Poosh today. In and out in 15 minutes. Then, more Japanese food. Just before the meal she said, “I’m not very hungry. I’ll just have a little bit.” Then, she ate all of her tempura, sushi and rice and some of Kim’s plate. She even joked that she was thinking about eating the chopsticks. She just kept commenting on how inventive the Japanese were in making food. “How ingenious it is to make Tempura vegetables. Very creative.” We come by our love for food honestly. Grandma Mary (mom’s mom) could not eat a meal without grunting her satisfaction and pleasure. Armenian means “lovers and inventors of the foods of the world.” No kidding. Look it up.

Dad continues to help at home. True, he doesn’t do the laundry right. True, he isn’t the best cook. True, he isn’t proficient in the ways of cleaning. No, he isn’t a skilled shopper. :-) But this much we know. He loves mom. He loves her deeply. And who could ask for more. Dad doesn’t show it or talk about it but he is dealing with so very much. He needs your prayers and support.

Finally, mom has just finished day 8 of 33 days of Poosh. This is 24%. Or in other words, she is ¼ of the way done. She is handling the treatments very well. She is tired and mildly nauseated but it could be far worse. Our hopes and prayers are that the tumors are dying. That these monstrous cells are unable to recover from the Poosh and the Koosh. That mom’s white blood cells are attacking them and sweeping their remains out of her body. Our hopes and our prayers are for a miracle.

Some say that the percentages are very low that mom will survive this calamity. Well, imagine the statistics regarding the safe crossing of the Red Sea on foot in the times of Moses. What percentage of people were raised from the dead before Christ came and showed that it was possible? Miracles are not bound by statistics or percentages. Miracles are God’s to give. And, we live in a day of miracles. Our hopes and our prayers are for a miracle. Please keep praying with us for the miracle of recovery for our Mom.

The Christensens

15 August 2007

They took Mom's staples out today at Poosh - she is very happy to have them out. Today was a good appointment as she got right in and right out. Mara checked with the doctor about her blood work and he said everything looks good. They had the "tumor board" today and discussed Mom. They are going to wait about 2 weeks before they check the Ommaya again to see if mom’s spinal fluid is circulating enough to allow Koosh in the spinal fluid. They are not sure they will do another scan yet, they will wait to see how things look in two weeks. So she will not be receiving the intrathecal Koosh for a while, but according to nurse Melissa the radiation should keep things in check until they can get the Ommaya working properly.

The Christensens

12 August 2007

Medical update:
Dave took mom to Poosh today and out to Benihana's for lunch. She really loved it and talked a lot about wasabi and ginger. She ate her meal and half of Dave’s. According to Julia, Dr. Glantz’s nurse practitioner, they are going to wait another week to do the “Koosh” in mom’s spinal fluid to be sure the blood flow goes all the way up. Right now it is not and they think it is because she still has a lot of swelling in her brain. They feel confident that the “Poosh” and the steroids will reduce that swelling enough that the blood flow will be good enough to start the Koosh via the Ommaya for her spinal fluid. They will do another scan next week to determine that. The good news is her nausea should subside when the swelling goes down. Also, the radiation nurses should take the staples out tomorrow. That will be nice.

Update at home:
Mom took a shower all by herself today. Apparently she didn't want help from Mara (modesty issues) so she got up and did it herself.

Dad is doing the shopping by himself (!!!!!!) and said he is ready to feed her dinner tonight. We might just do a surprise visit to see how things are going. :-) Dad is helping mom so much with her rehabilitation. He encourages mom to do things on her own but with his supervision. As it turns out, this is exactly what she needs. The kids all want to jump in and do everything for mom. We feed her; we hold her arms when she walks; we go to the bathroom with her. Dad lets mom do things for herself when she can. Tonight she was walked to the bathroom and back out to the patio without help. She can do it.

She was more like herself tonight than we have seen her since she has been home. We sat on the patio and read your emails and your comments on the blog. You have no idea how much strength she gets from your prayers and your kind words of encouragement and love. If prayers are like light, I would love to see the view from where God lives. The points of light are coming from all over the world and are steady and brilliant. We love you all and express our deepest gratitude to each of you for your light.

The Christensens

PS. Mom wanted to have this picture posted so that all the people in Armenia could see her family. :-)

10 & 11 August 2007

Friday

Mom had another Gamma scan this morning. As we left the house, she turned to her sisters Carol and Elaine and said, “I feel confused. But then again … I always have. We started the morning with a laugh. On the way to the hospital mom said, “Radiation and Chemo are such harsh words. They should call it poosh and koosh or something like that.” So from now on we are going to call radiation therapy “poosh” and chemo therapy “koosh.” :-)

After the gamma scan, we went to temple square to meet with President Monson. Because of President Faust’s passing the night before, President Monson’s office called to tell us that he may be a few minutes late because he was meeting with the Faust family.

We met him in the quorum of the 12 conference room on the first floor of the Administration building. President Monson shared stories from Hogansburg, New York and mom’s family. His memory was truly amazing. He spent an hour with us even with his busy schedule preparing for Elder Faust’s funeral. Dad anointed mom and he sealed the anointing. It was a special experience.

After the blessing, mom went back to the hospital to get her poosh. Then she received one more gamma scan. The day left her tired.

Saturday

Alpine Days. Mom came to the fireman’s breakfast in the morning and then the parade. It was so fun to be together. Saturday at Alpine days is a tradition. Then mom went home and had a good, long nap. We spent the afternoon by the pool at Brad and Kim’s and the evening hanging out at John and Mara’s. Mom ate a great dinner and even ate an Oreo and a root beer float.

We brought a chaise lounge out on to the deck for mom to be in and Carol said, “Hey I want a chair like that.” Mom replied, “Get a brain tumor.” Her sense of humor is intact.

We have felt the blessings of the Lord this weekend. We are so grateful that mom is with us and that she is doing so well. We pray that the tumors will be killed by the Poosh and Koosh. Thank you for your love and prayers and for caring so deeply for our mom.

The Christensens

P.S. For fun. Please add a "comment" to this posting with your names. Then we will be able to see all the people that saw todays posting. Just click on the underlined text just below this that says "# comments". Then add a comment with your name in it. Thanks.

9 August 2007

A good day.

First, mom had her spinal plumbing checked. At 8:30 she had an injection of radioactive dye into her Ommaya. If her spinal fluid is circulating correctly, the dye will be detectable by a Gamma camera. She had one scan at 9am, one at 10am, one at 4pm and will have one more in the morning. The procedure is called a cisternography. It is important that her spinal fluid circulates correctly so that when chemotherapy is injected to treat this fluid, it does not just stay in one spot.

Mom also had her chemotherapy consultation with Dr. Glantz and Julia at 11am. The meeting was a good overview what to expect moving forward.

Mom had her first radiation therapy today at 5pm. She was incredibly brave. The machine used to do the radiation was very large and looked like something out Star Wars. It scared me when I saw it. It was so big. See picture below.

More pictures are below in the photo section of the blog.

Mom took the treatment very well. The mask was not comfortable and made her feel claustrophobic. They strap it on VERY tight. Then they line up the beams and do the treatment. Today took about 20 minutes but from now on it will take about 5 minutes. Mom was in good spirits after the treatment. She had energy and was in a good mood. We went straight to the Alpine Days Family Dinner. She ate a little and socialized for about an hour.

Tonight mom took her first chemo pill. The pill is so toxic that dad has to put on a rubber glove before touching one of the pills. This is the same pill that mom will put in her mouth! WOW. Dad can’t touch it but mom has to swallow it. We will know in the morning how she did with it. We are praying that the effects are minimal.

Tomorrow morning mom gets one more gamma scan. Then, at 10am we are meeting with President Monson in his office. He is going to give mom a blessing. He was the mission president when her family joined the church. He used to come to their home from time to time for their famous fish frys. He is kind to make time to meet with us now. It will be a great blessing to be able to spend time with him.

Thank you for your continued support and love. Please keep up the fervent prayers.

The Christensens

8 August 2007

[Caution. The following paragraph may cause vertigo] This morning dad got a call from the hospital confirming mom’s appointment for tomorrow at 11. Tomorrow? The appointment for R&C (Radiation & Chemo) therapy was supposed to be today. So, dad informed us that it was moved to tomorrow. When Mara looked into it the appointment that they were confirming was actually for tomorrow with a different department in the neuro unit at Huntsman. So, mom missed her first R&C therapy today. The more people Mara called the more she learned about tomorrow. The 11am appointment is just one of many. She actually has a 9am appointment to get injected with a dye. Then a 10am appointment to have a brain scan. Then a very important 11am to meet with someone named Julie. Then another scan at 4pm. Then finally R&C therapy at 5pm. We found out about all of this because Mara was persistent and kept asking to speak to yet another scheduling nurse person. The Huntsman Cancer Circus is in need of a serious overhaul. I am convinced that if the same crew were managing a McDonalds it would be out of business in a week. It is SO frustrating. It has been 20 days since mom's diagnosis and still not R&C therapy.

On a lighter note. Mom is enjoying her time at home. The evenings sitting on the deck are gifts from God.

Mom’s appetite for red meat is still strong. She devours roast beef sandwiches and also loves mashed potatoes. It is good to have her closer and so nice to have her home. Pray for us tomorrow as we negotiate the Huntsman Circus. Mom is very anxious about starting chemo.

The Christensens

5 August 2007

Look unto me in every thought; doubt not, fear not.

Doctrine & Covenants 6:36

Today was a fantastic day.

It started at 3am for mom and dad. Mom was hungry for a steak sandwich. :-) That’s right. A steak sandwich! Thank heavens that Dan and Cami had made one for her the day before. Dad got up and prepared it for mom and she devoured it. She was up 5 different times during the night. That is hard on both mom and dad.

Mom got some rest during the day and got a chance to talk on the phone and in person to friends. She and dad have the most amazing group of friends. Faithful and supportive and full of life. She loves to see them.

We gathered together as a family this afternoon to break our fast together. Aunt Elaine made most of the meal. It was fabulous and mom ate like a horse. She had thirds! It was so nice to be together laughing and eating and just being. After dinner we went for a walk. It had just rained and God’s earth never looked or smelled so beautiful. Mom was thrilled to be out in it. (see photos)

We feel the blessings of our Father as we prepare for Wednesday. That is when mom will start radiation and chemo therapy. Thank you for your prayers and love.

In the midst of affliction, my table is spread.

With blessings unmeasured, my cup runneth o’er.

The Lord is My Shepherd verse 3

The Christensens

3 & 4 August 2007

Friday mom came home from the hospital! She had tears of joy to finally be home. She does not remember the 12 hours she spent here two weeks ago. It is so good to have her home.

Saturday

Mom got a haircut today. She now looks very much like a scholarly author and artist that lives in Park City. A little like Judi Dench (James Bond’s boss). Little Nicholas came to visit and when he saw mom he said, “Gama, Wha happen you hair?” (see video) Mom got a kick out of that.

Mom’s sister Elaine flew in today. It is great to have her here to help Dad (for the record Dad says, “I don’t need help.”) Lisa went home to Ohio today. She has been so much help to mom.

We are still praying that mom will be able to find her resolve. She feels disconnected from herself. She feels lost and without purpose. It has always been hard for her to sit. She needs a project and needs a deadline.

Please include mom in your fasting and prayers tomorrow.

The Christensens

2 August 2007

Today mom had surgery to implant an Ommaya reservoir. An Ommaya reservoir is a device implanted under the scalp that is used to deliver anticancer drugs to the cerebrospinal fluid. Dr. Glantz wants to be able to easily treat mom’s spinal fluid in order to reduce the risk of the Glioma appearing on her spine. This device will make this possible without added surgeries.

The surgery and the pain medications afterwards left mom mostly out of it today. She also had her stitches removed. This will help her to sleep better. They really bothered her and made it uncomfortable to lay on her back.

We are researching treatments and studies and survival statistics and stories related to GBM. There is so much information out there – some positive but mostly discouraging. I do not want to use this blog to repeat or interpret the myriad of information that is available. It is important that you know that this cancer is vicious and has claimed many lives. However, there are examples of people who have beaten it. So, if you find any information that would be useful in helping us to fight this, please send it to pray4liz@hotmail.com. We can use all of the help we can get. There are many, many treatment options.

Mom comes home from the hospital tomorrow. What a happy day that will be.

The Christensens

1 August 2007

Another good day. Mom is doing very well with rehabilitation. She will be coming home on Friday. This will be a good thing as she will be in more familiar surroundings with paint on the walls and floors covered with something other than gray linoleum. Hospitals are in serious need of mood enhancing makeovers. I am convinced that a regular, healthy and well adjusted person would begin to feel depressed and disoriented if confined to a hospital room for a week. The smells, the muted colors, the constant beeps and buzzes, the shared rooms, the limited space for visitors, the needles and oh yes THE FOOD.

It will be good to have mom home. This will give us a chance to prepare her for the difficult days which lie ahead. Chemotherapy and radiation will be difficult.

Mom had her mask made today for radiation therapy. They made a full face mask of her face. She will put her face into the mask and get a CT scan. Then each time mom gets radiation treatments, she will put her face in the mask so that the treatments are directed to the exact location necessary. When she is done with radiation, we will use the mask to make a statue to put in the entry. That should be fun.

Tonight, the nurses trained Lisa, Mara and Dad on how to administer medication to mom and how to care for her once she gets home.

Mom is getting back to normal. She is planning parties. She has planned a tea party for all the girls in the family. She is planning an Armenian bash in October. Mom loves parties. It is so good to see her slowly returning to herself.

Finally, we know that many of you would like to come and visit now that mom is home. We want to make this as easy as possible and reduce the jumble of having house guests for mom. So, here is the plan.

We have opened three, four star hotels. Each is less than 3 minutes drive from Herb and Liz.

- The Christensen Courtyard (Brad and Kim Christensen’s home)
(Two rooms, three beds, kitchenette, large family room, 1 bathroom)

- The Christensen Renaissance (Dave and Leilani Christensen’s home)
(2 rooms, 3 beds, 1 bath, lots of floor space for kids)

- The JW Ambuehl (John and Mara Ambuehl’s home)
(1 room with 1 full size bed, 1 bathroom, in room big screen TV with satellite included free of charge.)

To arrange a visit, please phone or email our lovely reservation clerk, Kim Christensen. She can be contacted at mama4boys@comcast.net or at 801-836-7550. Thank you for helping us minimize the impact of house guests while maximizing your ability to visit. Mom loves visitors as you know.

The Christensens

31 July 2007

Milestones of hope. Today was an amazing and amazingly long day.

Miracle #1 Mom’s therapy went very well today. She is walking better than ever. Unassisted! She played ball today with Mia for more therapy. (See photos). Lisa, Mara and Cami gave mom a full makeover. The male nurses were suddenly very interested in mom’s condition and in helping in any way ;-) (See photos). She is making great progress.

Miracle #2 We finallllllllly met with the doctors today for 3 hours. Picture this – A 4 person examination room was used to hold the conference with Mom & Dad, Lisa, Brad, David, Mara, (Dan was on business in Alabama), Cami. Each doctor paraded into the already packed room. Robbie the public relations intern, then Dr. Michael Montejo the radiology resident, then Dr. Randy Jensen the brain surgeon, then Dr. Lisa Hazard the 25 year old radiology oncologist, then at long last Dr. Michael J. Glantz. Each doctor gave us a little more information a little at a time. It was a little like having a meal at Costco from all of the sample displays.

Here is miracle #3. The Huntsman Cancer institute has not had a neuro-oncologist for the past 2 years. They are hard to find because it is such a specialty. We only know of one in the state and we can’t find where she is. So, one week ago Dr. Glantz moved to the Huntsman center from Massachusetts. His resume is at can be found at http://www.vtneuro.com/staff.htm . AND his personality is a PERFECT fit. He is caring and not arrogant and extremely competent. He spent an hour going over everything. “You are in charge of your body Liz” “We have a lot of options to choose from.” “We will work together.” Having him as mom’s doctor is a true miracle.

Mom has Glioblastoma Multiforme (GBM ) (Grade IV ). This is the most aggressive form of Glioma. She has 2 tumors (I know – we have said 3 then 2 then 3 then 2) and several other sights that look suspicious including the one in her cerebellum. These suspicious sights need to be killed so that they don’t grow.

Here is miracle #4 The chemotherapy that is recommended is Temozolomide (Temador) and can be very effective on this type of cancer when used in conjuction with radiation. Also, it rarely makes patients feel sick. It is a pill that mom swallows rather than 3-5 hours on an IV. There is a good chance that she will not have any symptoms from the chemo. This is encouraging news!

So, we have decided to start chemotherapy and radiation (whole brain followed by local) immediately as they should not diminish mom’s quality of life significantly. We will monitor this closely and make adjustments ad hoc.

The Lord is blessing mom through this difficult time. The blessing of faith and hope are singularly important to us now. Please pray that we will all be blessed with understanding the Lord’s will and with the ability to have faith to see it come to pass.

The Christensens