For Liz with Love

Liz's grave has looked a little spare for almost four months.

We wanted you to know that Liz's headstone monument is in place as of Friday, October 29, 2010. It was custom designed by Brad, her very talented and loving father. He researched on the internet and learned that most monuments are made in China and shipped here through a middle man. He wrote to a company directly and asked them to create what he drew up for Liz.

The finished stone arrived in CA by ship about Oct 12th, right when Brad headed to Japan and China on business... and lost his cell phone on a train. (It was returned. Gotta love the Japanese.) I helped to expedite (?) matters from NY by email and phone. It arrived in Layton UT Monday and we saw it in person. McMullin had to arrange things with the cemetery people in Farmington. Brad and I met at the cemetery to see if it was in yet, then to go have lunch. While we were talking about when it might be done, the truck arrived. We stayed to watch. In about an hour they had it situated and leveled. It looks beautiful. Brad has added her picture in the oval shown. I just don't have that picture yet.

The granite is two colors - a dark red and a charcoal black color. The flowers in relief on the heart are also from the red stone; if it is not polished it looks different in color. There are roses on a stem that branches and covers both sides of the heart, and calla lilies too. These were the flowers Liz had chosen for her wedding.

Please feel free to visit her grave in the Farmington City Cemetery. You can't miss the big red heart near the road. :) We love her, and we know she loves us. We will always remember her talents and personality. At the bottom of the marker it states:

"Our love for Liz knows no bounds.

Our family is always and forever."

We saw JD briefly today and will see him again tomorrow. I miss him when we don't see him. We share our loss and our love of a wonderful young lady. Thanks to all of you who have helped us through the pain and emptiness so far. I keep thinking I am getting used to Liz being gone, then something else will trigger the ache again. It will continue, and it will get a little easier with time.

It doesn't change the part that matters most: I know God lives. I know he loves each of us, individually. I have faith in His plan for us. I know His Son, Jesus Christ, lived and taught and died and was resurrected for us, His spirit brothers and sisters. I take great comfort in knowing we can return to our Father's presence. I am so grateful for the Book of Mormon which spells out God's plan of happiness. Just reading a few verses can bring me such peace. I know this book of scripture was recorded for us, and translated by Joseph Smith, a prophet, by the gift and power of God. I know that through the power and authority of the Priesthood and the sacred ordinances of the temple, we can be together forever as families hereafter. I want to live my life the best I can so I will see my beautiful daughter again. I have no doubt she lives, and she loves. Liz is busily engaged. She is happy. I felt that so powerfully in the temple when I performed her temple work. I know she is grateful for her life and her own knowledge of the gospel, and that she feels great joy where she is. I cling to this almighty truth, my anchor and my rock - my testimony of the gospel. I invite any and all of you to learn more about it. My family echoes these thoughts. It makes all the difference.

July and August revisited

Liz has been gone for about 7 weeks now. Here is a little more detail of those last few days.

Liz had chest pain following two liters of saline fluids and the Zometa infusion. She went to the ER at the U of U hospital. Pain was finally managed with morphine or dilaudid, but cause was not easy to determine. Chest pain is a known side effect from Zometa.

Liz was retaining fluids in her abdomen. She also became more pale and the conclusion was that she had internal bleeding. Given some blood she "pinked up" quickly. She then had angiography to try to find bleeding sources - unsuccessful. She tried repeatedly to get up from her hospital bed and remove her tubes and leave. We continued to tell her, "Not yet." She moved back to the Huntsman for a time, then back for more angiography, then back to Huntsman. She seemed coherent and hungry at first, even if her heart rate was still high, blood pressure was all over the map and mostly high, and she was heavily medicated for pain. She had gained 35 pounds of fluid weight during these few days, all in her lower half.

We kept asking why we couldn't drain fluids from her abdomen, and were told the pressure might be what was keeping bleeding at bay for now. They also said they would need to open her all the way up (neck to pelvic bone) and clean out blood and fluids, then pack her with gauze, and wait to see if this worked. They didn't want to do this; it was too traumatic and she was already having enough trouble with her heart and BP and pain.

Then she began getting less coherent. She repeated herself saying "It's okay" hundreds of times. She occasionally responded to a question asked. The doctors told us her liver was shutting down. If it can't process the blood, other processes shut down, including getting the brain the needed help to remain able to think clearly. (Sorry, that is the best I can do at summarizing their statements.) We didn't accept that she was going to die soon until the second doctor told us "she may not last the weekend" - both on Friday morning. She lasted less than a day after that.

We did get Rachel and Ben and their baby Hyrum here from Yakima WA Friday night, and Matt drove up from Provo. Other family members and friends dropped in and visited Liz one more time. She grew more yellowed without liver functioning, and we took her off the oxygen and kept pain medicine going. Saturday morning saw the arrival of my sister Saralyn and her family from Portland, along with my father and my sister Karyn and her kids (also there, visiting). Andre' drove separately from Montana. We enjoyed a quiet time of service - offering Liz ice chips or sips of water, braiding her hair, massaging her swollen feet and legs, changing her dressings (she was oozing from angiography incisions). Her breathing grew very difficult and then very slow.

When JD arrived Saturday at 9am we had all the men in Liz's life join to give her a final Priesthood blessing, one of release from this life. Brad sobbed as he began, then clearly told her of our love for her, and that she was free to go to her heavenly Parents and other family members. She was free to leave behind the mortal body that had become a hindrance and a cage for her glorious spirit. In an hour, she breathed less frequently, then she was gone. We all felt the presence of deceased family members there to greet her, and perhaps to offer comfort to those of us left behind. Liberty, at 11 months, quietly pointed up toward the ceiling several times. Maybe she could see what we could not. (I did look.) This was a sacred experience.

We cleaned up our belongings. Most went home or to a hotel to sleep. I stayed to help wash her body. I wanted to offer her this one last service. I felt so bad that her body had been through so much. She had bruises on her wrists from restraints trying to keep her in bed when none of us were there with her. A failed IV made one hand another massive bruise. Her swollen legs and abdomen looked like someone else's. Her eyes and jaw would not completely close. I cried for the pain and suffering she endured.

When I got home we went to begin working on her funeral arrangements. Her obituary needed to be written in an hour to be in Sunday's papers. We had more than enough food from generous neighbors, since our extended family didn't come around that day. That night, we decided to find a way to see the coming weekend's activities as a celebration of her life. We celebrated Liz's freedom from her difficult mortal body as the fireworks went off that night.

Tuesday the 6th we went to do Liz's temple work, giving her the knowledge and covenants that enable her to return to God's presence. As I acted as her proxy, I felt her presence, and an overwhelming sense of her joy and her love for all those who gathered with us. She truly is happy. It was the boost I needed to be able to get through the funeral a few days later.

I felt uplifted and supported, literally and figuratively, as we dealt with the many details of the next few days: we scanned hundreds of pictures of Elizabeth to show her many activities and talents and faces. She did an awful lot in nineteen years. We gathered instruments, artwork, and mementos to display with the many photos. Ladies who loved Liz did a wonderful job with setting these up, and Amy's sister, Emily, did a wonderful job creating a video of Liz's life in photos and music.

The funeral came together as if she were directing us. We loved the musical numbers. Liz's friend Zoe and her mother, my dear friend Lisa, sang "Pie Jesu." It was perfect - their clear soprano voices reminding us of Liz's beautiful voice. The little cousins sang "He Sent His Son," telling us that God had a plan, and he sent his Son, Jesus, to atone for all of our sins. Liz sang that song in church when she was about nine. Our whole family sang a hymn, Be Still, My Soul.

Each of our family spoke of her life, and our memories, and our knowledge of God's plan for us. We are blessed to know that there is life after death, and that we are sealed as a family, by the power of the Priesthood restored to earth. We miss her, very much. We miss her even more as some time goes by. It comes in waves, receding and then crashing over us again. There are times it is so difficult to feel happy. I don't know how people deal with death of loved ones without the sure knowledge that we can be together as families for eternity! It makes all the difference.

As is normal for those left behind, we wonder if we did ALL we could to help Liz. We wish for more time, and more knowledge, as things were unfolding. We decided to authorize an autopsy, limited to just her liver being removed, to see how damaged it was. A month later we learned she did have tumors in the center 40% of her liver, and one side was necrotic from pressure from the blood filling the sac around the liver. We feel that the radiation, combined with the study drugs she was taking (which increase the sensitivity to radiation), led to her tumors and damage to the liver.

We knew she had limited time when we saw each progressive scan and MRI showed more tumor growth. We hoped for a miracle. We know God could have healed her. We had the faith. We also know He sees the bigger picture. We don't always understand the why of things. We do know that Liz had done all she needed to do in this life. Now it is up to us to do the same, so we can be with her again.

As always, we have appreciated the faith and prayers on our behalf. So many have done so much to support our family! We love you, and we feel your love. We ask that God will bless each of you as you deal with your own trials. A dear friend just told me her son has melanoma. Another family member has breast cancer to face. Our Heavenly Father knows us. He gives us each a different set of trials to face, and we are to learn from them. Hopefully we will learn quickly to turn to Him, making it easier to endure.

On another side note, our son Matt crashed a four wheeler just 5 days after the funeral. We had gone as a family to create a new good family memory of fun together. We did have a great time, before the accident. He was lifeflighted to a hospital with a broken back, and released 3 days later. He had a compression fracture in the T-3 vertebra in his back, and wore a brace for three weeks. He also thought his right wrist was broken, and wore a split for a couple weeks. He had lots of road rash too.

It was very difficult to see another of our children face a serious injury so soon after Liz's death. While we waited for the paramedics to drive up Farmington Canyon, Brad gave Matt a blessing. He promised that Matt would be healed completely and have no lasting injuries. I immediately felt calm. I also knew that Liz was there with us, helping Matt go through this ordeal. She truly is our guardian angel. We are so glad it worked out well, and Matt didn't need any surgery or other therapy. He is healing well and doing fine. He will return to school at BYU in a week. He will have a handicapped parking placard to enable him to get closer to classes, so he won't have to carry books so far. Matt is doing well. I promise. :)

Let's find joy in life, as Liz did. Sing. Try something new. Give yourself to others any way you can. It matters.

Endowment for Liz

We will do temple endowment work for Liz on Tuesday July 6th. I will do her initiatory work earlier then we will be in the 6:00pm session at the Bountiful Temple. Please be there early if possible, and remember rush hour. If you can't get in that session we will linger in the Celestial room for others who follow.



Sorry if comments don't appear right away... I'm having some trouble with that.

Our Angel

Written July 1 Thursday

It's hard to believe that a week ago we were at home. Liz was having minor chest pain, vomiting, and trying to keep down some liquids. Now we have been in Huntsman twice and at the U of U hospital twice. She is not really lucid except for rare moments, likely due to the pain meds she gets by pushing a button. She breathes heavily and sounds like it is difficult, except after getting pain meds when she is deeper asleep. We hate to see her struggle with pain and discomfort.

We are back on the 4th floor here at Huntsman, room 4501. Liz looks mostly normal but gained so much fluid weight in her belly and lower half. We started steroids to see if inflammation of her liver can be corrected.

Written July 3 Saturday

This morning, after a beautiful blessing, our dear Elizabeth has gone Home ahead of us. She was peaceful and relaxed at the end. There are no words.

We are grateful for our time with our precious daughter. We will miss her terribly. We give thanks for temple blessings that offer us eternal families, bound by the holy Priesthood. We take immeasurable comfort in the knowledge that we will see her again, and will strive to be worthy. We invite your good memories and thank all of you from the bottom of our hearts for your support and love through the ordeal of her battle with cancer.

I will try to post pictures sometime soon.

Liz's funeral will be Friday, 11:00 am at the Farmington North Stake Center, 729 W Shepard Lane. Viewing hours are Thursday 6-8pm at Russon Brothers Mortuary, 1941 N Main in Farmington, and from 9:45-10:45 am before the funeral at the church. Interment at Farmington City Cemetery to follow.

It has been my honor to serve as Liz's mother.

Still in SICU

written Th 7/1/10 at 9:30am

I am back here with Liz in the SICU. Yesterday we thought Liz would move to Huntsman, but they were concerned about elevated white blood cell count and continued fluids in her abdomen. Doctors kept her here in SICU. I wasn't here after 9am so I was not as helpful or informative. I slept a few hours at home to try to make up for the long night before. (I was with Liz from 9pm Tues to 6:30 am Wed, then slept till 9am, then home.)

Today they are doing more blood work, and her WBC is up again. Liver numbers are also still a concern. A team tried for blood cultures but couldn't get a vein to work. (It has to be a new stick for those; they want fresh area so any existing line's possible contamination is ruled out, so her port and IV aren't good for this.) Liz is still very sleepy from pain meds. Last night we let nurses take care of her and got some sleep. I heard she tried a couple more times to get out of bed, and to pull on lines. They restrained her so she won't hurt herself. She has gotten more fluids and they watch urine output too. On a positive note, she has passed some gas, so her bowels are getting more active again. She is more likely to drink, eat, or leave this unit. It may be up to us to decide if she stays here or moves to Huntsman on the fifth floor.

Phil said she has metabolic acidosis yesterday. Ann, the nurse, explained it that her pH is lower than normal: it is 7.2 instead of 7.4 or 7.5. Correcting it is usually done by giving fluids, which in Liz's case is not easy to handle. Giving her any antacids won't help... yes, I asked. :) Her body is trying to compensate, which throws off other elements.

At this point we don't know if or when she will be up to either a wedding, a temple experience, or a reception. We hope in the next few days she will progress and be able to help us decide how to proceed. We thank all of you for your expressions of love and support and offers to help. If we figure out any way we will let you know.

Tracy

Liz and SICU

Here is an update with Liz.

Sunday morning they started giving Liz lots more saline. She got pretty worked up when pain got a bit out of control. They put her on the PCA (I'm guessing Pain Control Apparatus or something... Not CPA as I thought.) and Liz did better at staying pain free. She slept pretty constantly. Toward evening I encouraged her to try to stay more awake and eat. We ordered her some fish and some milk so she could eat cereal Dad brought. She ate most of a little box of Golden Grahams but only a tiny bit of fish, and drank milk. That night was better for me, with Brad there to take turns getting up when something happened. Her heart rate started jumping up again, and her blood pressure dropped. She also had gotten very pale, slightly yellowish. They gave her some blood to help bring her back toward normal. Then lots of doctors were brought in to consult regarding bleeding in her belly - Should she get surgery, radiation for tumors, or whatever. They moved her to the U of U.

They decided to use angiography - inject dye and watch where it goes with X-rays - to locate bleeding. The liver was the most likely place for the bleeding source, or maybe the bowels. Dr. Kinikini did the angiograms, Dr Mulvihill was the surgeon ready to explore if needed. They did not see any bleeding from any of the 5 major arteries near the belly, so they decided her body had stopped it with a clot. They did not explore, as they thought any washing might dislodge a clot. Liz was intubated so they could go right back in for surgery if bleeding began again, and because they had pumped her with 4 or 5 units (a liter) of blood and lots of saline. Her neck was swollen so they said she wouldn't be able to breathe on her own.

When I said, "She looks uncomfortable," Liz nodded her head. We helped her move a bit more. I asked if she wanted more pain meds - nod yes. Her eyes stayed mostly closed but she occasionally made a face or moved a hand (restrained so she wouldn't pull out any tubes), so we tried to pay attention and guess what she might want. I stayed till 11:30 and helped the nurse give her a sponge bath and change sheets. Phil came to take a night shift, so we had someone watching for those hints. (The nurse has two patients to watch and sits at a window where she can see beds and monitors when not in the room.) I had a good long time to sleep in my own bed. :)

Brad went in the morning. He was there to ask the doctor when they would extubate (remove the breathing tube). They watched her breathe a bit and said, "let's try now." She was still dazed a while, and said she saw bread and steak all around the room and wanted to eat, and drink. They wouldn't let her because her stomach and bowels shut down, and she would just end up throwing up. She could have a tiny ice chip every ten minutes if she tried to keep it in her mouth instead of swallowing it. (a teaspoon an hour)

We spoke to Dr. Grossmann about the scans. They show a large section in the middle of her liver has changed dramatically. The doctors aren't sure if the tissue was damaged from radiation and the B-raf drug interaction (as it affected Liz's skin very much, so it could to other tissues), or it could be tumor growth. Either way, it isn't working as it should. Blood tests show liver functions are down too, and the liver produces the proteins that help hold the blood in arteries, so that is probably why she was losing saline fluid into her tissues today. We can treat the liver as if it is inflammation with high dose steroids, and see if it improves. If it was really tumors it won't help, but there isn't much else doctors can do for tumors. There may be more SRS on a couple of new tumors in the brain later on.

About 5:30 they took Liz to try more angiography. They wanted to see if she is bleeding now. She looked good, so they removed the two access lines in her upper thighs so she can move more. She is back in her room but now it is the shift change so visitors are not allowed in again until 8:30. I plan to stay tonight to watch her. Liz will be here till tomorrow at least, then probably back to Huntsman.

JD and his parents came by to visit tonight but didn't get to see her. Diana Tibbs also visited with us in the waiting room. Yesterday the bishop came by, and Dar (my sister) & Jim, and Jacob Fluckiger (nephew, writing dissertation on tumor leakage) were here for a while. Liz, Brad and I received priesthood blessings which gave us comfort and a sense of peace. Despite crying earlier, I know things will work out as our Father in Heaven has planned. I love the gospel that gives me peace.

Chest Pain at Huntsman

After the slip on the stairs last Sunday, Liz has had more severe lower back pain. She spent most of the week on the couch lying down, as sitting or standing became too painful. It seemed to ease a little by Wed. and Thurs.

Monday, way too early, we went to get Liz's port put in. It all seemed to go well, and Dr. Scaife put it far to the shoulder so it wouldn't get in the way of any necklines including her wedding dress. We hoped it would solve our difficulties with getting IVs in her tiny veins.

Liz went to her shower on Wednesday evening and did well. She had so many visitors who brought cards and gifts that were truly generous. Thanks to all who came and enjoyed our evening! Sheri Seymour donated some of Tony's flashy rings so we could all have a little "bling" on. Lisa, Joy, Lesley, and Stacey, thanks for your tireless work at cooking, planning, inviting and cleaning to prepare for the event! Liz was overwhelmed with the love and good feelings from so many that night. She and JD knew each other very well for the questions asked too. :)

Thursday the 24th we went to Huntsman for her CT and MRI. We went to Fast Track where they do blood draws to access her port. They had no trouble flushing the saline in but a difficult time getting any blood out for labs. They tried Liz in many positions: lying down, sitting up, breathing or not, coughing - finally got a little. She did her scans and an added chest Xray to see if she fractured a vertebra in her back when falling.

At home that night she again vomited, and had some chest pain. She took oxycodone and breathed carefully and it went away after about 15 minutes. She knew she was dehydrated from not drinking and tried to do more, but she really couldn't. She also has been constipated since at least Monday due to taking extra narcotics (oxy).

Friday morning we went to the infusion center early, hoping that they could give her extra fluids and get her hydrated before her Zometa infusion. She had about 1.5 liters in before they added the Zometa. She visited the bathroom and had a BM. :) She took another oxy for pain.

About 15 minutes later she started having chest pain. It got worse, and the nurses went into overdrive for an "acute" situation. They checked lungs and did ECGs and all seemed okay, but they sent her to the ER at the U of U hospital for immediate care. This was a scary time. Liz was in so much pain. She got morphine shots, and still needed more. They gave her dilaudid too, which seemed to help. She needed another CT to compare with the night before, and the IV they added (thinking her port was the cause of chest pain) also felt like she was burning when they injected saline in her arm. She got versed to calm down, and benadryl in case of reaction, then the needed CT. At 8 pm we moved over to the 4th floor at Huntsman.

Dr. Grossmann told us her scans showed two new lesions in the upper brain and maybe many small ones down lower. She has one tumor by her heart as well. Others are same or larger size. This means the BRAF drug is not working so we are finished with it. (We cancelled trip to CA for Monday 28th.)

Options include using another similar drug, MEK, or trying anti CTLA4, recently announced in the news as ipamimumab (I think). We wonder about trying any surgeries to mitigate her pain in her back. We want her to suffer less and enjoy life more.

Please continue in prayer on behalf of Liz, her doctors, and her family. We feel the love and support from so many of you! We know God loves us. He has a plan for each of us. We try to remember to pray "Thy will be done" and mean it.

Father's Day and Happy 26th Amy!

Well, it has been a rougher week. Liz has had some nausea and occasional vomiting, including Father's Day blueberry pancake. It could be just from the study drugs, or maybe from radiation on her lumbar spine area hitting her intestines on May 22. She takes Zofran.

On Wednesday 6/16 she was to have her infusion of Zometa, then her CT and MRI scans. None of those happened because she couldn't get an IV in. After eating breakfast she got sick, then tried to drink more. Still, she was too dehydrated for any of the 5 pokes by 4 people (over three hours) to work. She got pretty upset with all the tries. They poke a needle (or a plastic tube that is sharp like one) in where they think they can get a vein, then they push it around to try to thread it. That's the part she hates. She ends up with bruises and feels very anxious.

The end result is that we rescheduled her CT and MRI scans for Thursday the 24th, and we will do the Zometa the next day, then we see Dr. Grossmann.

We also have her going in tomorrow morning early (6am) for Dr Scaife to put in a power port. This will go under her skin, on her chest somewhere, and can be accessed for drawing blood or for giving her medications or contrast injections for scans. We both kind of wished we had done this a while ago. The nurses have been sensitive to Liz's wish that it won't show with her wedding dress in three weeks too. :)

We also postponed our trip to UCLA to see Dr. Ribas. I emailed him and asked if he preferred to have us come later with scans, or on time without them, and he wants to see them. We will fly June 28-29th now.

On another topic... we are happy to say wedding announcements were mailed (except those for whom we didn't have addresses yet). Let us know if yours doesn't arrive this week. Other planning is progressing too.

Oh, and we met with Dr. Meic (say "Mike") Schmidt, a neurosurgeon on Wednesday too. He said he would want Liz's skin to be very healthy before he would do any surgery, because it needs to be able to heal well. Liz has some rash where she had radiation, and he said lower levels of tissues would likely be somewhat damaged as well. He said she can use the back brace for longer trips but should strengthen her muscles doing normal activities as she can, which is encouraging.

This morning her heel slipped off a stair and she sat hard, which hurt, but she is fine. We helped her rest on the couch for a few hours after that.

We are grateful for our wonderful children! Phil, Amy and Libby have brightened up many days lately, and Matt comes up from Provo most weekends (to play games with Tommy and to see us). We look forward to having Rachel, Ben and Hyrum here soon! She sent some cute pictures in a nice Father's Day card, and we hope to skype today too. Tonight we have a good dinner planned to celebrate Amy, the daughter of our hearts. We love her!

Road trip and surprise packages

Sorry it has been this long ... many of you have asked how things are. Here's the latest.
After Liz had her SRS on brain mets May 24-25th, she restarted her study drugs on 5/31 at half strength, then whole dose on Wed June 2nd for her appointments at UCLA.

This early June trip to L.A. was a driving one. Liz and Matt and I went in my Acura. After a short trip to Springville from staying overnight in Provo we went back for Matt's wallet so he could drive too. Unfortunately we forgot the bag of treats I put by the back door until we were down the road farther. We stopped in St George for snacks and lunch. Soon after that we tried to use an old power converter so Matt could plug in his laptop... but it didn't work. It killed my radio instead. Okay, it just blew the fuse, but that meant we had no music from CDs either. We made it through traffic and unfamiliar freeways with good directions from Val. We always appreciate the warm welcome, beds and food waiting for us there!

Her appointments in L.A. were fine. We saw Dr. Lo, dermatologist. We got another 3 weeks of medicine. (Next trip is on Monday 6/21 because Dr. Ribas will be gone the 23rd.) We even got to Diddy Riese's for an ice cream cookie sandwich - we shared, this time.

We had fun playing card games and hanging around with Val, Madison, Stillman and Brent for those two days, then got back on the road. Liz wore her back brace while traveling most of the time. After replacing fuses (Liz and I did it by ourselves!) the radio/CD player worked. We tried the converter once more and replaced the fuse again, then we told Matt no more tries. We listened to some talks on (marriage) relationships and communicating from Rachel - they are by Dr. John Lund, called "For All Eternity." We enjoyed the ideas and his examples. I recommend them. We arrived in Provo at 10:30 Thursday night, and slept there. We drove home to Farmington the next day.

We had a great surprise Friday night after we went to a movie. A "surprise package" had arrived: Amy and Liberty were on our front porch waiting for us! They came earlier than expected (June 30th was scheduled) and we were very happy to see them. We had lots of fun trying to get Libby to be happy about being here. After three days she let her grandma hold her and was fine. Then Tuesday Phil came too! Another surprise! We are just tickled to have them. Phil will head to Chicago late in July for a chance to interview with IP (intellectual property) opportunites, then finish the volunteer internship hours with the Red Cross before school starts. Amy and Lib will go August 11th I think.

Tuesday June 8th Liz went for Moh's surgery* on the jawline where a squamous cell carcinoma was removed in April. (It was postponed from the 24th) She was apprehensive and we asked for a Valium to help her calm down. Then Dr. Hadley looked at her face and said we don't need to do anything. Hurray! She will just monitor it and report quickly if anything new appears. Great news. (*Moh's surgery involves taking thin slices off and checking the slides to see if the tissue is free of cancer cells; then more is removed as needed.)

Liz has her side effects back: aching in various joints, usually knees, ankles, hips, sometimes feet and hands; some fever, loss of appetite and nausea, rash/bumps, and trouble sleeping. She tries to get rest she needs and still do some fun things.

Saturday we went to Provo for a shower/luncheon at Brick Oven. We had lots of people there and Liz got some fun gifts and gift cards. Dar and Shelly brought her two dozen red roses and delicious chocolate, besides coordinating the shower. Liz later went to see "The A-Team" and loved it. Sunday was a little harder, and she didn't keep her Cheerios down. She stayed home from church with JD. I wish she didn't need to repeat the joint pain every time she restarts the study drugs, and it was hard to see her get sick today. Hopefully she will feel more like herself tomorrow. She has developed redness and a bump in her left eye too, and we hope that will clear up quickly.

This Wednesday we have an appointment with a back specialist; her monthly Zometa infusion, and MRI and CT scans. It will be a long day at Huntsman. We will follow up Friday with Dr. Grossmann to see results of scans.

We thank so many for your prayers. We feel them! We have great family, friends and neighbors who are jumping in to help us plan and carry out a wedding reception in ... less than 4 weeks! (yikes!) We know things will work out. Thanks for your added faith.

Tracy

8 turned to 12 spots in brain

Today we heard Liz will wait until tomorrow to begin the SRS treatment, partly because Friday's MRI showed 12 brain lesions where before (5/5) there were 8. It makes the planning more complicated. She will begin Tuesday at 11:45 and go again on Wed at noon. Both times they hope to treat 6 spots, taking about 90-120 minutes each day. Dr. Tward and the nurses want to be sure she can lie on her back for that long comfortably. She took 90 mg of morphine sulfate on Saturday (instead of 60) morning and night, but went back to normal on Sunday. She also took some oxy to keep it manageable. Today at 3 she hadn't taken any oxy yet. She did say the numbness had spread around her calf a little more today (not what we hoped).

We focus on what we can do. We can get treatment for 12 spots instead of only 8 we knew about before. We can get radiation done and then begin BRAF drug again after some time off.

We also got a reminder call about an appointment she had for tomorrow to get the rest of her squamous cell carcinoma removed from her jawline. It turns out they need her for 2-6 hours, so we said not tomorrow. We need to do the SRS and will get this in two weeks on June 8th. It may take that long because they remove only thin slices of skin at a time, check for the cancer, then go back for more if they see it still there. I had thought it was a one time deep spot removal. I suppose I should have asked questions long ago when we set up the appointment.

Today Nell helped Liz clean much of her room. It looks amazing! Liz said she mostly supervised and made decisions. :) I was gone for a while to remove my personal things from school, and tell them I don't know when/if I will be back. It is more important for me to be available for Liz, and the ladies I worked with all understand that. I appreciated their hugs and concern.

Lumbar tumor, treated with Radiation

From the MRI yesterday, we learned Liz had a tumor growing in her lumbar 3 disc, which is putting pressure on nerves to her leg. (Other discs also had growths. We also know the wedge of T11 is still there.) We went to Huntsman for planning and immediate radiation treatment, a one-time dose that should kill the tumor. Hopefully it will shrink quickly as it grew, and relieve the pressure and pain. (Dr Tward said 50% shrink and 80% have less pain.) Liz has had a lot more pain just today than before and took oxy (2 or 3). She has been nauseous as well. Dr. Tward said if he had done a five day dosing it would have a 10% chance of returning but with the single dose it has a 17% chance. It can be treated again later. This area was NOT treated in April's radiation (even though small tumors were present), because they don't want to irradiate too much of the bone marrow at a time.

Liz stopped BRAF drug (last dose Th night) and we feel fine about its interaction with the radiation today. Any skin burn/rash won't show nearly as much on her low back and belly. By Monday's SRS on her head, she will have been off for 3 full days, almost 4. It also seems to matter more how much she has right after radiation, when its effects are highest.

I told Liz I think her leg pain/numbness has been a tender mercy, even if it doesn't feel like it. By learning of this pain Th night, we added the MRI of her lumbar the next day, and got it treated the second day. Perfect timing. It is hard to think of it being good when she is feeling so sick and in pain. Her shoulder pain was probably due to the Zometa and is waning.

We had an extra adventure on the way to the hospital today. We decided to take the suburban so Liz could stretch out better (sitting hurts more than lying down or standing). As we stopped in SLC the car died. No power at all. We pushed it around a corner, and Brad fiddled with scissors and got the battery connected again. A few blocks later it did it again. We got it going, and duct taped the scissors in place to get the rest of the way. Brad dropped us off and went to fix the problem. He got back soon enough to get a tour of the various X-ray machines in the radiation oncology department - fun for a guy who works in that field. :) We were very pleased with the care Liz got and especially that she got in so quickly, on a Saturday.

SRS machine is fixed, and numbness in her leg

Dr Chris Anker has called us daily with updates on the SRS X-ray machine, and we heard this morning it is fixed. Yay!!! We have an appointment today for MRIs: to map her brain for SRS treatment on Monday and Tuesday, and also her lumbar spine area.

This week Liz has had pain in her left hip, thigh, and knee, getting lower and somewhat stronger daily. She has stayed horizontal on the couch with her leg elevated to ease the pain, and she takes her morphine and ibuprofen for it too. We figured it was from her Zometa infusion Monday.

Then last night (Thurs) Liz noticed she couldn't feel the heating pad on a portion of her lower leg, just below the knee on the outer front. She said it feels like pins and needles around the numb area. We know numbness and tingling are signs of possible pressure on her spinal cord, so there was a flurry of emails and calls this morning. So today she will get an MRI of her lumbar spine area too, to see if there is something new there. Liz also said she felt a bit less pain over the last few days in her lower back. She thought maybe the wedge that was left of T11 disc finally collapsed and thus hurts less (and it could have moved toward the spinal cord too).

Liz slept in her back brace to help keep things straight. She will wear it more often now, I think. She has started the steroid again for swelling, and is off her BRAF drug today so she can do SRS treatments.

We feel so glad to hear her SRS treatment will happen soon, despite Dr Shrieve and Dr Anker being out of town next week. We are grateful for the support of so many!

SRS delayed - machine is broken

As I think I wrote before, the X-ray machine used for SRS treatments has been broken at Huntsman for over a week. They got a part from Germany on Friday and hoped it would be fixed by Monday. No such luck.

Liz went yesterday to do the SRS planning MRI at 2pm. Because Liz had no success Friday with the IV, we were asked to get the IV line in at Infusion, who sent us to the blood lab nurses, who asked for the doctor who ordered the line, and we waited a while. Then Dr Anker called and said not to do the MRI because the SRS machine is still down. He was apologetic. He suggested Liz gets back on the B-Raf drug and then we can do the SRS when the machine is back up.

I don't like having her go back on the study drug if they might get it working in a day or two, as she already was off it for 5 days. (Dr Ribas said 4-7 days off, before and after radiation.) I asked if she might get treated elsewhere sooner. He said she could go to IHC / IMC for treatment. That would start with a consult appointment, then their MRI, then they use the "halo" to hold you still. (My word; he said pins, which are screws that go into your head. I saw the metal halo frame on TV long ago.) When Liz heard this she said she wanted to wait for the Huntsman machine, so she can do it with the mask instead.

Liz's veins looked good because she drank a lot all day Sunday, and a nurse there said she could do her infusion of Zometa now instead of on Wed, saving her a trip later. We got the infusion and Liz was glad to be done with that. Now we just hope the machine will be up and running shortly because the longer we wait to get the brain tumors the more radiation it will take. They are very small now - the biggest was about 1/2cm x 1 cm on 5/5 - and we'd like them treated asap before they grow much.

So she took a half dose of her study drugs last night. We hope the machine will be fixed and she can quickly get treated with less time off drug again. It is a guessing game we don't like to play. We want her to benefit from study drugs and not miss taking them for long; we also want to minimize effects of radiation on her skin/scalp when she is treated. Please join us in praying for those who can fix the machine to do so promptly. Thanks.

Tracy

SRS approved and a wedding date

Hurray! We got approval from the insurance company for SRS treatment, Tuesday morning. We opted to go on our scheduled trip anyway, as we were about to walk out the door.

We asked Dr Ribas at UCLA how long to be off of the study drugs before radiation this time. He said on Tuesday 4 days, then Wednesday he said Roche (drug company) says 7 days. (Grr.) The half life of the drug is two days but it takes longer to clear it from the body if you have taken it longer. They also say 7 days after radiation is when to restart the study drugs.

We drove back from CA with my sister, Val. (We hope to hear Val and Brent's daughter, Cambric, will have her baby any day now.) Liz slept some and read some. Val did most of the driving. We got lots of time to talk. :) We like how smooth and quiet her car is, and its great gas mileage. It was fun to see Afton, Stillman, and Brent there too. Matt drove us home from Provo Th. night. We were amazed at our very clean house - those angels dropped by again. :)

Friday we went to Huntsman early to meet with Dr. Anker, a young man (looks like Matt) who works with Dr. Shrieve, regarding SRS treatment. He took more pictures of Liz's skin since some were out of focus last time. We also found out the big X-ray machine there hasn't been working; a part was flown in from Germany and they hoped it would be running by Monday. We still have priority but it may not happen until Tues 5/18 or later, due to backlog. Then we went upstairs for an MRI - to plan the SRS procedure. Liz came back in tears; they couldn't get an IV in, so no MRI was done. She was likely dehydrated. (The same fellow who got her IV in one try last time did three tries without success.) We go back Monday (today) for another try. Liz has been drinking a lot of liquids.

On a positive note, we have a date for Liz and JD's wedding: Saturday, July 10th. We'll try for a reception the night before, so she won't be worn out with too much happening on one day. We look forward to a very busy 8 weeks of anticipating, planning and arranging. Liz and JD have worked on getting ready for the temple endowment before the wedding. We don't have a date for that yet. We bought a beautiful dress the previous Saturday, May 8th, in Provo. So many of you have already offered your help, and we promise when we get a minute to breathe we will figure out how to let you. :)

We saw Iron Man 2 on Saturday, and enjoyed it. (I had my earplugs in.) Liz spent a little time out and about and got sunburned lips and nose while trying to stay out of the sun. Little adjustments are necessary. We planted a few vegetables and flowers. Life goes on, and we make the best of it. Thanks for all of your support!

Mother's Day week - SRS?

Dear family and friends, (newer below)

Wednesday 5/5

Today Liz had a brain MRI and CT scans of her torso. We saw Dr. Grossmann in the afternoon. Here is the good news: According to the CT scans, many of her tumors in her liver, spleen, and lungs shrank over the past 6 weeks. There were a few that stayed the same size, in her lung and bones.

Bad news: there is a new one (small) near her right kidney, next to the muscle wall by the hip flexor.

All this would indicate that the B-RAF study drug is still working on her soft tissues, and that the Zometa infusion may be helping to stop cancer from destroying bone any further in her spine.

Dr Grossmann said he felt good about the results from B-RAF based on this much information. He hoped the study would allow her to continue. Then he went to get MRI results.

Worse news: When we finally did get results from the Brain MRI, it was not good. There are 8 small tumors in her brain, in various different places, above her nose. Any brain cancer removes her from study medications because it isn't allowed in the study to have cancer in the brain, and because treating the brain becomes top priority. Usual treatment is radiation. The B-RAF makes her extra sensitive to radiation too, so that's another reason she can't do both at once.

Normal treatment of small brain tumors is either whole brain radiation (avoiding the eye area) OR stereotactic radiation surgery, or SRS, where tumors are targeted from all possible angles very specifically. At Huntsman they are very aggressive at this, but the upper limit of number of tumors in the brain is 7, one less than what Liz has. SRS would involve one treatment of the many tumors on one day. Hair loss would be minimal. It also may well leave behind smaller invisible tumors. Whole brain radiation would involve treatments over 15 days (3 weeks of 5 days) and she would lose all her hair. It would blanket the entire area and presumably kill tiny tumors too. She would feel much more fatigue and need more time to recover from that much more radiation.

It is possible that after radiation Liz's brain might become "stable" - no new tumors growing, and get rid of existing ones - and after a period of time, perhaps be allowed back on the B-RAF drug.

We are, as always, looking into other treatments:

-MEK (another mutation blocker, like the B-RAF but farther down the line of cell development),

-Young TIL cell harvest/transplant (multiplying of own targeted white blood cells and then give massive dose of chemo (hair loss), then reinject those cells to fight cancer)

-CTLA-4 (vaccine I think; I can't recall its specifics)

-any palliative treatment, to improve quality of life.

Brad has worked tirelessly to research these areas and knows more than I do.

This was hard news today. We all cried a bit. Liz then turned to comforting JD and us. She asked the doctor if she should not plan on going back to school in the fall, and he paused then said "Yes." He added that if school is a goal she wants to work toward, and friendships there are important to her, and if going would be uplifting for her spirits, go ahead. He also said that when he first spoke with us, her life expectancy was probably a year or less. (She had not heard this before; we never asked.) He said now he might expect "months" left. I know hearing this was shocking for her and is hard to accept. We don't have to see it as fact. We aren't giving up. We can keep working toward treatments and even a cure. We may get to enjoy Liz for many years. We love her and hope and pray for her comfort and healing.

We ask for your continued prayers and faith on her behalf. Our ward had stake conference last week with 60 stakes in Davis and Morgan counties, so we have fast Sunday this week. I have asked that our ward fast for Liz. JD is also asking his ward to do so again. If any of you would like to join us we will appreciate it.

Val, I don't yet know if we will still come on Tuesday. It may be that we need to go before "exiting" the study, and if we do so, we may be a little more likely to be allowed back into it later. I will let you know when we do. Right now Dr Grossmann was planning to contact Dr Ribas to confer about Liz.

Thanks to all of you for your support.

This is Liz's neck and upper chest, with the shadow from her chin. The black spot in the center is a marker for aligning radiation treatments.

5/8/2010 Saturday

On Friday we went to see Dr Shrieve (radiation oncologist) and Dr Jensen (neurosurgeon). They originally said we would do a brain MRI to map where stereotactic radiation would be done. Then they said we won't do that until it gets approved by our insurance. We discussed the difference between the SRS and whole brain radiation. WBR kills whatever is there at the time, but if the cancer is moving there from elsewhere in the body, then it won't keep that from happening.

SRS would only get rid of the lesions we can see right now. It won't kill tiny tumor cells we can't see yet. It can be done again. These doctors asked about Dr Grossmann's recommendation to do SRS because of skin reactions to radiation. After discussing it, Liz showed them the patches on her back and chest, red and brown and peeling with some rash bumps. Those look rather unusual for radiation treatment. Then we also said it is worse on her hips, where it is purple skin and was extremely rashed and irritated. Seeing those areas, they were so surprised they asked to get pictures. They also felt these pictures would help insurance people see what kind of reaction she has that they deem SRS to be better that whole brain for her situation. We are hopeful that we will hear from insurance that the SRS will be approved soon. If we hear by Monday we may get treatment done midweek, then head to UCLA either the following week or three weeks later.

Liz feels fairly good. Her pain has been manageable. She and JD want to get married as soon as possible. We are working toward that goal, probably between mid-June and mid-July. We have hope that with these 8 brain lesions treated, and B-RAF continuing to help her others, she will still feel good. She may continue with school in the fall at BYU.

Thanks for all your love and prayers and support. We feel it. :) --Tracy, Brad, and Liz

April radiation and a new baby!

Sorry it has been so long, but here is the last few weeks' worth on Liz.

After her MRI on her birthday, Liz started taking a steroid, dexamethazone, for inflammation of her spine. It did affect her appearance, so she got a bit of the "moon face" (chubby cheeks) and a little belly. She also had more of an appetite which was good. She is now tapering off of the steroid.

We asked about Liz taking study drugs vs. radiation treatments for her cancer in her bones. Dr. Ribas said she could stop taking the drugs just during the days she has radiation, then start again afterward.

So, on April 12, Liz began five days of radiation treatments on her spine and her hips. It seemed to go fine. She developed red skin rectangles where the radiation went into her body, front and back. Her esophagus was irritated from it too, and by the following Wed. it was pretty painful to swallow. She began to take more oxycodone to help with the pain. Monday 4/26 she started on a liquid to gargle and swallow. It contains lidocaine for pain, maalox for acid, and diphenhydramine for swelling reaction. She also has clotrimazole lozenges to suck on for the thrush (her tongue is white) and we feel like these are helping somewhat. Both of these were used before when she was released from the hospital after IL2 treatments.

On April 13th Liz had an infusion of Zometa as well. It is a medicine which blocks cancer from being able to react and break down bone. It took her nearly two hours, instead of 30 min, because they got the wrong person's prescription ready, and almost gave it to Liz: Elizabeth K Harris is an older lady who also needs zometa but takes it with other medicines at a very slow rate.

Zometa made her bones ache that night around her ribcage, an expected side effect. She took oxy to help. This will be a once a month treatment for her bones to grow better over the next 4 months. Liz received rides to radiation treatments from Melissa Lewis, Cindi Wendler, Nell Howell, and Lisa Safeer. Dinners were brought in by Karen Leonard, Linda Leonard, Yalanda Atchison and Jeanne Moore and Nell Howell. They were delicious!

Then Liz had an appointment at UCLA on 4/21. Liz did blood tests fairly easily and saw Dr Chmielowski (sp?) because Dr. Ribas was called away on an emergency. She received the next three weeks' worth of medicine and we plan to return on 5/12 for the start of cycle 5.

After that appointment Liz flew to Yakima to join the rest of us at Rachel's house, to see their beautiful new baby boy, Hyrum Benjamin Jensen. Luckily Hyrum is small enough that Liz can hold him. He is a sweet boy, and his parents are very happy and devoted to him. He was born on 4-6-10 and weighed 6 pounds 12 ounces and was 19 3/4 inches long. He has lots of blond hair. It was fun to have a little break from some worries and get away. Even Matt got to come, right after finals at BYU. We worked on a few projects there to help out. We enjoyed participating in Hyrum's blessing too.

We drove home through the night from Sunday to Monday the 26th. We all feel better for getting a good night's sleep in our own beds. Liz keeps a pretty good attitude most of the time. She does get tired of her body always having pain somewhere, or her appetite being gone, then returning, only to be less able to swallow. She keeps trying and we will work it out. We so value our friends who help lift our burdens (weed my flower beds, and mow the lawn, feed the dog...) and share our concerns. Thanks for your support!

April radiation to come

Liz and I went to see Dr. Bauman, a back surgeon, at the IHC clinic in Salt Lake on Monday. He looked at an MRI of her spine and said that if she were a little old lady with osteoporosis, he could help her with kyphoplasty. We could see the discs T3 and T6 were gone. T11 was only a small wedge shape left, tipping a bit toward the spinal column. He explained that putting the acrylic cement in only works when there is enough bone structure for it to adhere to. She has more curvature of the spine at the area between her shoulder blades and just below. IF she experiences any more extreme pain like she had between January 30th and February 20th, she should come right in and stop further breakage. We were disappointed but better educated. He also said if she falls or picks up something heavy she will break her back.

Later we asked him about getting her a back brace to help stabilize her spine. Dr Bauman prescribed one for her so we may get that. I think as she travels in a car or airplane especially she may be glad for the extra support. She feels every twist and turn, deceleration, and bump. The pain is much better than in February.

We also met with Dr Ying Hitchcock, a Chinese lady who prefers talking to listening when it comes to dealing with patients. She agreed to do radiation on Liz's spine and both hips over the week of April 12-16th, rather than the standard two weeks, because we have planned for Liz to go to UCLA for a clinic visit then go to WA to see her sister Rachel's new baby boy. It also will mean she is only off the clinical trial drugs for 5 days instead of 12. (We were so glad she can just take a break and get right back on them. If we had known this in Feb. we would have done things differently too... 20/20 hindsight.) Liz has a few more black tattoo dots to mark her body for those treatments.

Liz has begun to drive a little, using the Suburban or my car as they are easier to drive than her car with no power steering. She likes feeling a little more normal and free to go as she pleases.

We loved having a quick visit from my sister Karyn, Andre' and their kids over Easter weekend. We enjoyed hearing messages of hope and faith in Christ as we celebrated his Atonement. We rejoice in His love and trust in His power and goodness.

To be continued... the clinical trial drug!

Liz and I went to UCLA today and spoke with Dr. Ribas. He looked at her CT scans (I brought them on disk) and said they don't look good. Liz told him how much better she has been feeling. We pointed out that the first scan he saw was from 1/27, three weeks before she started on the study drug, and that during those three weeks she went downhill very fast in pain and mobility. It is possible that most of the growth shown occurred during that time. He felt we ought to have seen more improvement across the board, or in all areas of her body, so maybe the drug is only working for some areas; perhaps some are due to a different mutation. There is another medicine which fights at another point in the mutation cycle, MEK. This would be a plan B option. The fact that she feels so much better now is a good arguing point if Roche decides she ought to be removed from the clinical trial for her cancer progressing too much.

Dr. Ribas said Liz can pursue radiation for the cancer in her spine. She should stop taking her study drug when radiation starts and then start it again when it ends. The half life of the drug will not interfere with the beginning of the radiation cycle. He also said kyphoplasty is fine to do on the drug. These options are both on the table for dealing with the cancer in her spine and deterioration of a few discs.

We are relieved to hear she can continue on this medicine. I do feel strongly that Liz made great progress while on it. I have prayed that her doctors would be inspired in their treatments and recommendations for Liz. We know God watches over us and trust in His plan for her future.

One other small concern was a bump along Liz's jaw which showed up in the last few days. Dr Ribas said it looks like squamous cell carcinoma, a side effect for some patients. We tried to arrange to see Dr. Lo but he was unavailable today, and we leave tomorrow. We will try to arrange a dermatology consult and excision in SLC.
(The study "requires" the sample for testing and covers costs only if done here.)

We stopped at Diddy Riese for ice cream sandwiches made from cookies -- YUM! Liz can use the 500 calories; I don't need them but I enjoyed them too. We head back tomorrow midday, after we turn in our laughable rental car. I saved some money but Liz wishes I hadn't... the Suzuki firenza is a gutless econobox. Whatever. We are just spoiled with using Val and Brent's much nicer car the rest of the time. :)

Happy Birthday Liz - in the hospital for MRI

3-27-2010

When we got to the hospital yesterday we heard we had to admit Liz in order to get her into the schedule for the MRI. So we sat around while paperwork was done. The Air Med team came and got her IV line in quickly and gave her a hat for a birthday present. Then we waited for her MRI, which happened at 2:45pm and takes 90 minutes. Dr Donegan came and said he had seen it even before she returned to her room. He said there are compression fractures in discs T3, T6, and T11. There is tumor mass in the spinal column as well. Since she doesn’t show any signs of immediate danger to her spinal cord with symptoms like headaches, numbness or tingling in extremities, difficulty walking, loss of bladder or bowel control, he feels she can leave safely. He said only moderate activity and no heavy lifting. (That is what we have been doing.) We hope to have other doctors see her scans and add their expertise.

Dr Donegan said one possibility is injecting a substance between discs to keep them from compressing more – called kyphoplasty. I looked it up. [Pronunciation: \ˈkī-fō-ˌplas-tē\ Function: noun : a medical procedure that is similar to vertebroplasty in the use of acrylic cement to stabilize and reduce pain associated with a vertebral compression fracture but that additionally restores vertebral height and lessens spinal deformity by injecting the cement into a cavity created in the fractured bone by the insertion and inflation of a special balloon] – from Merriam-Webster online medical dictionary.

We don’t know whether to stop the study drugs, which seem to be helping, in order to start radiation, or try to continue. The decision may be up to Dr Ribas in LA. We go Tuesday for a Wed. appointment.

We got to Provo late for our dinner with family but enjoyed good food at Brick Oven. Then we had talking and game time at the Cedar Circle house with a few visitors. Afton and Madison did a great job with decorating and making delicious cupcakes! It was nice to have Liz feel a bit more normal. We got home late – about 11:30pm – and she opened a package from Jimenezes and a card. I think she felt loved. :)

Saturday I made cupcakes and ran around cleaning up for an open house. Liz was happily surprised to see so many neighbors and ward members. I told her “They love you!” We so appreciate your continued prayers on her behalf. Liz went shopping and out to dinner with JD’s parents Saturday too.

I hope to get copies of some pictures from family who had cameras.

CT scan on 3/25

3-25-2010

Dr Grossmann called about her CT scan today. It shows significant growth (double or more) in liver and bones of back and pelvis. Other areas are lessened. Maybe she can’t be called “stable” and enable her to continue with the study. He did ask radiologist to amend report to indicate bleeding as possible in liver. “I wish she could stay on the drug. She seems to be benefitting from it… I thought before it was worth it to wait on bones and continue study; now I don’t feel that way.” Two discs are compromised and there’s a compression fracture. We need to see with MRI if spinal column has soft tissue damage. He wants her admitted to hospital to get MRI of spine. I asked him to call Brad to tell him too.

[One concern I have is that her last CT scan was 1/27. She didn’t start the study drug until 3 weeks after that on 2/17, so tumors had time to grow quite a bit. That period was when she had big changes in how she felt. Even though this scan shows some tumors growing a lot, it could have been happening that long ago and now be slowing or stopping. We can’t know for sure.]

Liz should decide about the hospital. I asked if we could bring her in Saturday so she could have a normal birthday tomorrow – she had plans for dinner and visiting – he thinks that is too long to wait to get started. He said getting an MRI would be easier with medication to help with discomfort or maybe apprehension; MRI takes longer than a CT scan. It will be easier to have a radiation oncologist, surgeon, and osteo specialist involved if she is admitted.

She is likely to need surgery or radiation of bones asap. Surgery would mean 7-10 days in hospital. Radiation was not supposed to happen while on study drugs; it multiplies effects, at least on the skin.

Dr Grossmann called Dr Ribas for input – he still wants to see Liz next week (wed appt). IF B-raf study isn’t allowed due to cancer progressing, she may be able to get into another one: MEK (?) – similar mutation blocker. Dr G will email some still shots from scan. I will take disc of CT scan with me.

Liz wants another opinion. --We will get doctors from U of U hospital and perhaps from an IHC hospital too, to see scans and offer opinions.

Questions: Can we still do TIL cell treatment? Can tumor be harvested here instead? Start growing cells if possible. Can they freeze it or ship it fast enough?
Brad’s wish: stay on meds another cycle, still do TIL harvest and grow cells, THEN chemo & reinject.
Will do: Go in Friday morning for Air Med team to do IV, then MRI. Still go to Provo for bday stuff. See or hear results and go in Sat. afternoon if need to be admitted.

Lines down and out! It's a good thing.

Liz went yesterday to the Huntsman center and got her Hickman line out. It was convenient when she needed IVs or blood drawn, but she will be glad not to need the lines flushed every night with saline and heparin. So will I, as I did that part.

Liz was a little apprehensive at first, since the last "simple procedure" involved cauterizing with shocks. After a minute or two she was calmer and did great. Breathing calmly helps. After numbing the area - prick and stinging - all Dr. Scaife did was put in some scissors next to the tube, then open them slightly to enlarge the opening enough to get the cuff of fabric out. (There is a cuff on it so the body has something to hold onto and keep the line in place.) Then she just pulled the inner 8 inches of tubing out while keeping pressure on the vein up by Liz's neck, until it clotted enough to close. She just has a steri-strip over the small hole and it will seal up fine.

Liz is happy to think of showering without having to tape on plastic over her line, and to be able to raise her arms above her head more easily without it pulling. She has been feeling much better lately, and went out to dinner last night with JD for a burger and fries. Life is good!

She has had some swelling in joints - from knuckles to wrist, shoulder, hip, ankles - which occasionally makes it harder to move. She feels better, even if she is under 98 pounds. We try to fatten her up and she eats as much as she feels she can.

"Feelin' Stronger Every day..." and a crash.

We returned from another trip to UCLA on Tuesday. Liz had two appointments on the 4th and 8th. She is feeling better and stronger. She has more energy and can eat more, and moves about more easily on her own. She has been on the study drugs for three weeks, and started the second cycle. She still takes morphine twice a day and oxycodone a few other times and in the night. Her body has been doing better at processing food, although she still is not eating as much as normal. She weighs 98.8 pounds now, and we think there may still be some waste to get rid of, as her stomach still feels hard sometimes. She gets cold often, as you can see from the picture on the plane.

Side effects - skin rash is present over nearly all her body. She has a red patch on her wrist that has now become thickened and rougher (since Monday when we saw a dermatologist). We have prescription creams and hope they will help ease discomfort and lessen the rash. The rash typically goes away after another 3 weeks from now, we hear. Liz also has joint pain, currently in her right wrist and index finger.

Her back pain is still there. We also mentioned that her vertebrae look different and had two doctors look at them. There may be some breakage from metastasis, making them stick out further. Because she is feeling better right now we won't worry enough to involve an osteo specialist; likely that would mean getting a brace, according to Dr Grossmann. We have a CT scan coming up in about 12 days, before the next visit to UCLA on 3/31.

Today we noticed new freckles on Liz's face - tiny ones, they just weren't there before. We may start taking weekly pictures. We are also trying to note location of pain daily.

CRASH - On another note, Rachel and Jill had way too much excitement when they tried to drive home last Friday 3/5. Jill was driving and the car hit some ice or slush in the HOV lane in Salt Lake. The car spun around and was hit in the driver door by a truck pulling a horse trailer. Jill had a 3 inch gash on the back of her head and was unconscious for a few minutes. Rachel had back and pelvis trauma and pain. Both kids were uninjured. Jill and Rachel both went to the U of U hospital to be checked over. Jill was released with stitches and/or staples, and she and her kids went home Sat or Sun with her sister driving halfway. Ben drove down Friday and Rachel was released from the hospital Saturday afternoon after her contractions lessened. They drove home Tuesday to Washington after Rachel was feeling more mobile. Their car (Ben's first) was totaled, and will need to be replaced.

We are just very grateful that it wasn't much worse, with two pregnant women and two children. Brad was there for Rachel when I could not be. The most frustrating part was that Rachel was strapped on a board and in a neck brace by the ambulance crew, then not allowed to move for 5 hours, causing her pain. This was due to lack of communication between the OB and Trauma departments. When they finally let her move, much of her discomfort left too. She is still very sore and will move slowly and carefully for a while, and is on Lortab.

We are grateful for blessings! We know the accident could have been much worse. We are glad to have family around to help and to visit and uplift us. God gives us what we can handle... sometimes we wish He didn't think so highly of us. :) We are so fortunate to have Val and Brent welcome us to their home in North Hollywood and loan a car for our use. We enjoyed watching the Oscars with someone who knows the business and voted. I loved getting to hang out with Val, buying fabric, going to church, pulling weeds, playing games, whatever. It's all fun and we love getting together.

Free at Last!!!

In spite of Senna-S twice a day and a second shot of Methylnaltrexate, Liz had not pooped for 12 days when we took her to a digestive health center in Ogden. Fortunately Brad managed to get her a same day appointment on Tues 3/2 before we would leave Wed. The doctor said there were good sounds in her bowels, and the X-ray showed her colon was full but her small intestines were good.

He said use double the normal dose of Miralax (over the counter med) powder dissolved in liquids both morning and night (so four times normal each day), which can help put liquid back into stools to make them easier to pass. Liz has been using less of her narcotics for pain too - she takes the morphine for long term release and much less oxycodone - since they remove moisture from stools. After taking some miralax that night, she did get fleet results. She eventually got to the diarrhea stage on Thursday, so we are backing off on miralax, and continuing with Senna-S. You don't know how much we take the body for granted until it doesn't function as we expect.

Liz has been eating much better too, now that she feels like food has room to move. She has eaten more fruits and vegetables to help add fiber, and Thursday night ate a small piece of cheese pizza. Today (Friday) for lunch she had clam chowder and some fruit. Life is good. She gets around much more easily by herself as well due to lessening pain in her spine, and she is feeling stronger and more energetic due to eating more food.

A few side effects of the study drugs are the rash as previously mentioned, and also joint pain that seems random. Today her right shoulder, wrist, and hip hurt a bit. She has had knuckles swell and turn a bit red too, and her ankles got sore. In general she feels much better since taking the study drugs beginning Feb. 17th. It is amazing how much of a difference there has been the last two weeks.

We enjoy staying with Val, Brent, and Stillman here in North Hollywood. There home is beautiful and their hospitality so gracious. We eat well and drive their cars. (That has gone better this time too. We left at 6:50 Thursday and voila' - real freeway speeds on part of the journey! ) Thursday night we played 5 crowns, a card game, and then Missionary Impossible, which finally ended. I liked how players can lay down trial cards for each other, and the only way you can get rid of them and be able to continue playing is to add the blessing card on top. When we count the blessings the trials shrink before our eyes.

End of February

Rachel has come to visit us for a week or so - which was a lovely gift. She drove down here Thursday the 25th from Washington with her cousin, Jill (Harris) Springer and her two children. Jill's mom, Cindy, just had back surgery so she is happy to have visitors too. Rachel looks like she really is pregnant now. Liz has been sleeping with Rachel, which means I get to sleep with Brad again for now. :)

Friday we went to the doctor, because Liz had some persistent hardness in her abdomen which sometimes was painful. Dr Grossmann feels it is due to trouble with her bowels. She hasn't eaten enough hard foods to really need to poop. Also, morphine and oxycodone, both narcotics, tend to make the intestines stop doing their job of moving food through. We used a shot of methylnaltrexate which helped move gas and relieve pressure. (We will probably do that again.) We also added Senna-S to her list of pills to take, which stimulates the bowels.

As a result, Liz has been trying more foods, with mixed results. Friday night she had peanuts, popcorn, and some muffin! She has more of an appetite but some foods still don't stay down. Today she had some mini wheats cereal and milk, very slowly, a few strawberries, some smoothie that she said was too sweet - then the liquid came back very fast when she moved to try to get ready for church. We stayed home.

Liz also now has more redness and visible rash, especially on her face and neck, and forearms. She puts lotion or cream on it often. Her joints in various places hurt more, currently both shoulders, left wrist, fingers on right hand, and ankles. Both rash and joint pain are side effects of the study drugs.

We return to Los Angeles this week on Wednesday the 3rd and come back the ninth. Liz has appointments on the 4th and 8th. After that, she won't need big blood draws. We have an appointment to get her Hickman line taken out on March 19th.

We thank you all for your support and prayers and faith on behalf of Liz. She has been looking at dresses and hair ideas in a bridal magazine - Brad bought it for her. You gotta love a man who thinks like that.

98 pound weakling

When we were in L.A. we got Liz some morphine which helped a great deal with her pain. Liz has been sleeping fairly well, either sitting up against pillows or even lying down again, although her back usually hurts more afterward. She feels pain in her right shoulder, and her left wrist is getting sore from doing more of the weight shifting work. She has some pain in her abdomen where her liver and spleen are, and also lower below her navel.

Since last weekend, Liz has been drinking juices and some milk. She has eaten some soft fruit like mandarin oranges from a can or strawberries or bananas. When she has tried a few bites of cereal in milk, chewing very carefully, it has come back up. She had the second liter of saline on Monday morning after she vomited from too much water at once (about 3 oz.)

It has been frustrating to see her begin to get more food down then not keep it down. She has had mixed results with milk products too. She gets tired of applesauce and strawberries after a few days. We tried chicken broth and then chicken noodle soup and again have mixed results. Some tastes just get old quickly. We do smoothies twice a day or so, changing the flavors, and Brad has bought lots of various drinks - gatorade, SoBe, Fuze and other juices - to tempt her.

Yesterday we did another shower and Liz weighed 100 pounds, back up from about 97 or 98 I think. (She kept very little down on Tues-Fri last week.) Her appetite is slowly returning but her stomach is still so touchy. She can't overdo it with cold or heat, or volume. Liz felt hungry enough to try apple cinnamon oatmeal, then a couple hours later we tried egg/bacon/cheese omelet. That was a bad idea and it all came back. She gets so discouraged when she gets sick. It hurts her back and abdomen every time too, causing more pain.

This morning (Thursday 25th) Liz had a tiny portion of Rice Krispies and milk, some apple juice (too strong) and then some smoothie about 1:30. We take it a little at a time. She has had some low fever (about 99 or 100 degrees) and some rash, an expected side effect from the study drugs.

Thanks for recent notes and short visits. Just remember she is now sensitive to light and sound as well. :) We appreciate your support through all this!

IV Saline is in

Saturday, Feb 20, 2010

Liz had pain meds at 215 and 730, then drank too much water at once and vomited it. That hurts so much. We took her downstairs and started a liter of saline. Being novices and because the nurse said she didn't know how fast it would go, she had 3/4 of it in her within about 20 minutes. Then we slowed it down. :) Brad watched her while I went back to bed. Liz even sounded better when I returned - her voice has been so frail and soft. She has still tried to sip fruity juices and water. Her temp is about 99.4 degrees.

She has tried a little smoothie and a tiny bit of milk to neutralize the acidic stuff. So far so good. She kept study drugs down this morning as well.

She has more localized pain on her right side, where her liver is. We hope it will dissipate soon. Heat has helped.

2-18-10 9:40pm

Today we flew home from L.A. via Phoenix. Liz took her clinical trial meds at 8am then vomited 40 min later when I helped her get dressed. I estimate about half or a bit more of the meds stayed down. Other than that she didn't vomit, but only tried sips of clear liquids, including sprite, some snapple juices and water. She just started taking the study drugs for this evening. Her morphine has helped with pain but makes her very sleepy and causes difficulty focusing eyes or thoughts at times. She also noticed sensitivity to light and sounds. Today she also had 5mg oxycodone a few times for pain with traveling on roads and in planes. She seems very glad to be home.

I am very encouraged that she could keep liquids down today, even a minimal amount. We are hoping the study drugs will stay down more easily tonight and from now on. I sleep with her in my bed so I can respond quickly if she needs meds or liquids or just comforting.

Brad, et al: As I understood Dr Ribas' info about PTN (IV nutrition): Liz is unable to eat food right now because of the cancer metastasis. Her liver and spleen are under attack and stressed by the cancer in them, so they are less able to help break down food. Forcing IV nutrients into her will just overload them more and cause more stress on digestive process organs. He said we need to treat the cause of the inability to eat, which is the cancer, using the study drugs, rather than trying to get food down that will just overwork those organs. As long as she keeps hydrated and can keep most of the drugs down she will improve and become able to eat. (There was more to it than that, but that was the gist of it.) We will keep a very close eye on her, as Brad said to Dr Grossmann.

2-19-10, 10am

She kept all the meds down last night. I got her in bed by 1030 and settled by 11. She stayed propped up on pillows as that has helped her sleep better these past several days. She woke at 2 am and we adjusted heat and support. Woke again about 6 to tell me I was talking in my sleep. :) Up to bathroom at 8:30 and did swish and spit med for thrush. Then started taking study drugs (slowly, a few minutes apart) at 9. No problems yet with nausea as she has kept still too.

11:30 am

Her pills have stayed down, and Liz has started to drink juice. She revels in sweet flavors after only water for so long. There is joy in the simple pleasures. :)

Tracy