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!