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!