Lasix Is Finally Working!

Hi Everyone,

The Lasix Lauren has been taking to reduce fluid and puffiness seems to finally have kicked in and is working. Lauren has lost 16 pounds since April 12th!! 6 pounds in the last few days. She is still very tired and not very hungry. Hopefully, her energy will slowly come back and so will her appetite.

We went to breakfast with a bunch of our friends yesterday and Wo seemed to have a good time. She ate a little of the dippy part of her eggs and a piece of toast. We went to a medical supply store after breakfast to get Lauren a binder for her stomach. It was called Yoder's and is in Hartville. The lady that helped us was very sweet and asked Lauren why she had surgery. Lauren told her the whole story and the lady wanted to give Lauren a big hug and said she would pray for her. Wo said her stomach feels better with the binder.

We have to head back to Michigan this weekend. Lauren has an MRI on Sunday. Yes, you better believe I checked and double checked to make sure the date was right. Sunday at 2:00. She has labs and a visit with Dr. Sonnenday on Monday. Pray that her liver has grown and is healthy. He should be telling us what day her next surgery will be.

I have been changing Wo's dressings every day because they are leaking so much fluid. The scar by her chest is where it has pulled apart and you can see below the skin. The doctors said this was ok and normal. The top part is healing, but the part at the bottom of her chest seems to be getting bigger and today when Lauren pulled her bandages off and looked at it, busted out crying. The poor kid is in such a fragile state that it breaks my heart. Yesterday, when we were in a store called Marcs, I looked at her and wanted to cry because she has been through way too much in her young life and she never complains. I gave her a kiss on the cheek and told her I loved her, but sometimes that doesn't seem like enough. I wish so much I was the one going through this and I know Mark wishes it were him. This should be the happiest time of her life planning her wedding, and instead she is worried about incisions, drains, losing water weight, surgeries, and just plain surviving. Hopefully, one day she will be able to plan things without worry.

I have two pictures for you today. The first one is of Peanut. He is so spoiled and loves to sleep. He crawls under blankets and gets quite cozy. The second is of Wo and her little buddy, Penny, who never leaves her side. She and Lauren have such a special bond. Peanut has always been my baby and Wo thinks he is a total brat, probably because he has bitten her a few times. He has bitten me too. I now understand why tiny dogs are sometimes feared more than big dogs. A big dog will growl and give a warning, but in Peanut's case, he will just bite. Only if you try and take something away from him or push him away. Penny would never hurt anyone. She is way better natured than the cranky little man.

That is about it for now. I will update after the MRI. Thanks for your prayers and support.

Love,
-Pam

Slow moving.

Hi Everyone,

I guess I should update since it has been a week since I have done so. Lauren is about the same as she has been. Not much appetite, puffy, sore, and tired. Sorry, I don't have anything great to add. It is just very slow going. We are hoping that once the bad part of her liver is removed, things will improve.

Lauren and I went out on Wednesday, first to have labs done at Mercy and her wedding dress had come in and needed to be picked up. It was kind of sad because they asked Lauren if she wanted to try on her dress, and she just said, Yeah, right, like it would fit. She was having a bad day because she felt so huge and at one time said to me after seeing her reflection in a storefront, "Oh my gosh, I look like one of those huge women that have to wear big dresses because that is all that will fit." My heart broke for her. Can you imagine what it would feel like to lose over 20 pounds and feel good about yourself, and then in a few days gain all that back plus 10 more pounds. It has got to really mess with a person's mind and self esteem. It was the first day since surgery that she had done her hair and makeup and looked so pretty, but no matter how many people told her that, she didn't believe it. I hope so much that her swelling goes down soon.

We went to Panera for lunch. I had a yummy spinach salad and Lauren ordered half a sandwich. She ate about a third of the half and was done. The only thing she really likes are her protein shakes, which are very good for her because they have 30 grams of protein. She is supposed to have 100 grams of protein a day, but rarely gets that much because she just isn't hungry.

After lunch, we went shopping for dresses for my nephew, Matt and soon to be niece, Katie's wedding on May 4th. I got a black dress and Lauren got a black and white dress. They are really cute and the best part was that they were on sale!! Lauren was exhausted after our outing and has been recovering all week.

A few times this week, Lauren has walked around our block which is about half a mile. She is really trying to get better, but it is so difficult.

Wo's incision is healing great at the bottom, but is still oozy and pulled apart some at the top by her chest. She had a bubble of fluid in the middle and wanted to pop it. I said absolutely no to that and I cleaned it, put Neosporin on it, and redressed it. The next day, Lauren was sitting on the couch and pulled her blanket back. there was a basketball sized wet spot on the front of her nightgown. Her dressing was soaked and when she took it off, the bubble had popped. I swear, if we could just pop her body with a pin, she would lose so much fluid!!!

I called Dr. Sonnenday's office on Thursday because he said he wanted us to call five days after seeing him to see if the Lasix was working. I told his nurse that she had lost 4 pounds, but still felt really swollen. She didn't call back until Friday and said Dr. S wanted her to stay on the same dosage, no increase. He knows best, so that is what we will continue to do.

As I read back over this post, it sounds kind of Debbie Downer, but really it is just that recovery takes time. I am sure Lauren will continue to improve and once she has the next surgery, will do much better. Please keep her in your prayers, but do not pity or feel sorry for her. That is the last thing she wants. She is very tough and will get through this and be that much stronger!!

Major news flash!! Lauren and I just went down to the basement and she weighed herself. She lost 6 more pounds!! Maybe the Lasix is finally starting to work. Her dressing was soaked again too!! Lauren let me take a picture of her incision. It's kind of funny. She gets a kick out of showing people her scar. This is a girl that would never show her stomach to anyone before!! If you are squeamish, don't look. You have been warned!! I will update again next week. Until next time...

Love,
-Pam



Don't scroll any farther unless you want to see Wo's tummy!!!!!

Back Home Again

Hi Everyone,

Well, we made it to Michigan yesterday. Lauren had her ultrasound and saw Dr. Sonnenday. I think things will start looking brighter now.

We got to Michigan at about 12:30 yesterday and went straight to the CVC (cardiovascular center) for Lauren's ultrasound on her legs. We had a really nice technician that explained everything to us. I am happy to report that Lauren had no blood clots!!! Yippee!!

Lauren is supposed to walk as much as she can, but she was so tired from the ride up and the CVC was so far from where we parked, that she rode in a wheelchair. When I pushed her all the way back to the cancer center, I asked her at the elevator if she could walk the rest of the way and she said yes. So we parked the chair and got on the elevator. She walked to Dr. Sonnenday's waiting area with  little problems. She does get out of breath quickly because she is carrying about 30 pounds of extra water weight since the surgery. It is so weird because her face and neck look so much thinner, but her body and legs below the waist are bigger!!

She sat and kind of dozed off while waiting to be called back. The nurse called her back and her blood pressure was still really low. I think it was 100/40. It was 80/40 in the hospital and she was really light headed. While we were waiting in the exam room, Sis called and asked where we were. She had finished up her work and was heading over from the children's hospital called Mott, where she was working this week. Sateesh, Dr. Sonnenday's surgical fellow, came in first to examine Lauren. He had assisted Dr. Sonnenday in Lauren's surgery and came to see Lauren most days when she was in the hospital where he lead rounds. He is the nicest guy, always smiling and happy. He informed us that he was flying out in about 20 minutes to retrieve a liver for a transplant. He removed the stitch Lauren had from her drain and I don't think Lauren felt a thing. He asked her a lot of questions about her swelling and medications she was taking. He said the oozing of her incision at the top was ok and not to worry about it. It was not infected and would be ok. The bottom half of her scar looks great and is really healing nicely. I'm sure they aren't too worried about the scar because it will be cut open in a few weeks anyway. Maybe one day, Lauren will let me take a picture of it. My Mom and Dad were shocked at how big it is.

Sateesh left and went to brief the big kahuna, Dr. Sonnenday. We are all so in awe of him, I'm sure we look like big dummies just sitting and staring at him. Haha. He is so easy to talk to and I have never heard one person at U of M say one thing bad about him. Every time any nurse or tech asks who Lauren's surgeon is and we say Dr. Sonnenday, they always say "He's the best." Every single time. He checked Lauren over and told her to keep taking the lasix and he will call her next week. If she loses weight, it is working, if not he will up the dosge again. He said other than her potassium being low and Wo being anemic, her labs look much improved. Her liver functions were all normal which is awesome. He said her hair could be falling out for numerous reasons. Stress from surgery or her liver regenerating are two reasons. One of my our friends wrote to me on FB and said after her liver surgeries, her hair fell out too. I was worried Lauren was developing ascites, which is swelling and fluid around the belly that has to be removed by paracentesis, which is basically sticking a tube in the belly and draining huge amounts of fluid. Dr. S and Sateesh both felt it was fluid from the surgery and not ascites. Thank God for that!! Lauren asked Dr. S why she had to have an MRI on the 28th and not a CT. If you follow this blog, you know how much she hates MRIs. He said it would give a better picture of the side they removed the tumors from in making sure no new tumors had grown and to make sure the two they removed were completely gone. It was a good enough reason for Lauren, so she quit her grumbling. Dr. S wants Lauren to have labs done again this coming week at Mercy so he gave us orders to take with us. Other than the fluid and the other things I mentioned, he felt Lauren was doing well and quite happy about things.

We decided to go for a late lunch after that. Sis and Bruce met us at Applebees. They have a 550 cal. menu that Sis, Wo and I chose from. They had steak and shrimp and I had steak. Bruce had buffalo wings. This was good for Lauren since she needs to eat a lot of protein. Too bad she only ate about 1/3 of it and was full. Bruce tried to eat the rest.

 We said goodbye and were on our way back home. I stopped at a rest stop about 80 miles into our trip back home because I couldn't keep my eyes open and I knew Lauren should get out and walk. I got a big Starbuck's coffee and it did the trick. I was dancing in my seat all the way home!! Lauren was having a really hard time in the car. Every bump really hurt and her legs were killing her. I gave her an ativan to try and calm her down and she dozed a bit the rest of the way. She was so happy to get home. It is 10:30 this morning and she is still sleeping. Poor kid.

 She hopes to start walking on the treadmill today to try and get rid of her extra fluid. I'm sure if she puts her mind to it she can do anything. We are hoping she will start feeling better and have a turn around this week. This has all been harder than we ever could have imagined. Thak you so much for your support. I will update you of anything new. Until next time...

Love,
-Pam

Taking Things Day By Day

Hi Everyone,

Lauren is doing about the same. Pain in her left shoulder and so puffy. She tries to get up and walk around some, but I don't think enough. Today she went outside with Ryan and walked down the street to the stop sign and back. Other than that, she has been sitting in the recliner.

Lauren had a lot of leakage at her incision site yesterday. She is so puffy from the waist down. She managed to go to the basement and step on the scale and what a shocker!! She has gained 29 pounds since her surgery. All water weight because she doesn't eat enough in a day to gain any real weight.

With the incision leaking and her being so puffy, I decided to call Dr. Sonnenday's office. His nurse called me back and after I told her everything, she said she was going to page him and come up with a plan. He wanted her to get labs at a local hospital, so he faxed an order to Mercy Medical Center in Canton. He also said to up her lasix to two pills per day. Mark was off so he drove us down and dropped us at the door. Lauren was afraid they wouldn't be able to find a good vein because nobody has been able to find one for a very long time. She put lidocaine on her wrists and in the bends of her arms so it wouldn't hurt when they started poking. The nurse was very patient and took her time to really look and wouldn't you know that she got a good vein on the first try!! Lauren was very relieved.

Dr. Sonnenday's nurse also said that he wanted Lauren to come to Michigan on Friday to have an ultrasound on her legs to make sure she has no DVTs (blood clots). He also wants to see her to check her over. So we will be going to Michigan tomorrow morning for her afternoon appointments. Another one of his nurses called today and said Lauren's potassium is low, so he was sending a prescription to our pharmacy. The pharmacy called and said they didn't have it in stock and it wouldn't be in until tomorrow so they called a few places trying to find some. I called a pharmacy and found it in powder form as he had prescribed. So I had to go to that pharmacy, go grocery shopping since I hadn't been home in two weeks, and go refill Lauren's prescription at her regular pharmacy.

I will leave you with a picture of Lauren and her pal, Penny. This was taken yesterday during a thunderstorm and Peanut is hiding in the blankets because he is scared. Lauren got her hair cut yesterday because it is falling out everywhere. We aren't sure why because she hasn't had chemo since February. Maybe stress from the surgery or something else. Who knows. Thanks for supporting Lauren in her journey to be cured of this cancer. Until next time...

Love,
-Pam

Change In Surgery Plan, But Lauren Is Doing Great!

Hi Everyone! I can't keep track of my updates! I am trying to update on Facebook, CC.org, and here. It looks like it has been a long time since I wrote anything here, so I apologize. Lauren is doing much better every day. We are at Kristen and Bruce's house right now and hopefully Lauren will feel good enough to go home tomorrow.

Things didn't go as planned for Wo's liver to regenerate quickly. She had a CT last Wed. and it showed not much if any growth as was hoped by Dr. Sonnenday. He was away on a much needed vacation, but kept in touch with his team. They told us that it might have been so much chemo or the Theraspheres that have kept it from regenerating quickly. They assured us it will grow, but may need more time. Dr. Sonnenday called Lauren Thursday night and told her that he had a new plan. No 2nd surgery right now. He wants to wait 2-3 weeks, do another CT and then operate. He said she could live on what would be left right now if he took the other side out, but he would feel better if it were larger. Remember, her whole liver is still inside her, but cut in half. This is supposed to stimulate growth of the good side. Crazy, huh? Lauren is definitely fine with this because she feels it would be so difficult to face another surgery at this point in time.

Lauren was released from the hospital on Thursday. She spent ten days in that joint!! I was fascinated by everything that went on since I was studying to be an RN before I had Ryan and never made it back to complete my degree. The novelty wore off quickly and we were chomping at the bit to get the heck out of there. Too noisy, people interrupting Lauren's sleep, bad food, no privacy, snoring roommates, stinky bathrooms, sleeping in a recliner, etc., etc., etc. I sure do give nurses so much credit. Most of them were so kind and caring and worked so hard. The doctors seem like they live there. They are always there!!! Lauren had a lot of excellent care.

There were many things that stick out in my mind of this experience, but one was extra special. From the time Lauren was in the SICU until the time she was released, she had a surgical team that would come and see her every day when they did rounds. This team was made up of a surgery fellow ( a doctor that has finished his residency and is focusing on a specialty), residents, and medical students. In the morning, at around 6:30 about 10-15 doctors come in the room and stare at you while the fellow asks questions and tells you the game plan. There was a med student named Lizzie, that would come in every day before the rest of them. She would talk to Lauren and try and answer any questions she had. She was the sweetest, kindest, most caring person we had ever met. What an angel. She wants to be a pediatrician and will be the best doctor. We will never forget her.

Wo is free of all her tubes and hoses. Yay!! The surgical resident that put stitches in her drain site with no anesthetic also took her drain out. Did I tell you about that? His name was Sharriff and he was from England. He had the coolest accent. Well, anyway, Lauren's drain was leaking and he needed to put some stitches in it to make it quit leaking. He said the lidocaine shot hurts worse than the stitches, so we stupidly agreed to let him stitch her up with no anesthetic. Lauren almost passed out from the pain it hurt so bad!! So when he came to take the drain out and had to put in a few more stitches, we said lidocaine, please!! The shot did sting and Wo said it felt so creepy when he pulled the drain out. But, the stitches didn't hurt. He was kind of an aloof type of guy, but I bombarded him with questions. I told him I liked his voice and he said he finds American voices kind of annoying. He doesn't understand why we draw out our words. That cracked me up. He also said in England when studying medicine, you must practice techniques on each other. He has had a tube put down his nose to his stomach. He said it was awful. Maybe they need to do this kind of stuff in the states so doctors know what things feel like!! He also thought keeping animals as pets was inhumane. He thinks they should be able to live in their natural habitats. I agree, but think dogs and cats love to be pets if they are treated right.

We have been at Sis and Bruce's house in Ypsilanti since Wo was released. They have been so great through all of this. Sis came to see how Wo was doing every morning before starting work. They both came to see her after work too and questioned Lauren's doctors if they felt something needed to be done. How great is that? Mark and Gio came up for the weekend and Grandma Tommie and Papa Ron came for a visit yesterday.Mark and Gio stopped at their house on the way up and picked up a recliner for Wo to use while she is up here. She is very comfortable sitting in it. Everything feels pretty good on her except she still has shoulder and neck pain. Her incision site is healing nicely. She has to take lasix every day because she is still holding a lot of fluid and I must give her a Lovenox shot in her belly once a day to prevent blood clots. She numbs it with lidocaine before I give it to her and she doesn't even feel it. We are so excited to get back home. We miss our dogs so much, we can hardly stand it. We also miss Ryan, who is taking care of them. Thanks Bub!! We miss you.

Mark and Gio are leaving today because they have to work tomorrow. Sis and Bruce are going to a chief resident dinner tonight!! Fancy!! Lauren and I are hoping to go home tomorrow. It depends on how she feels. The bumps really hurt her, so we may go to my Mom and Dad's, which is about 80 miles away, stay for a night, and then go the rest of the way on Tuesday.

Thanks for all your prayers, cards, and concern. We are lucky to have so many people that care for Lauren and our family. I am leaving you with a picture of Lauren sitting in her recliner with her special guy, Gio. He has really showed Lauren that he will always be there for her and take good care of her. Talk to you later.

Love,
-Pam

Lauren Is One Tough Cookie!!

Hi Everyone,

Happy Easter!! I am trying to type this in the dark in Lauren's room. The last week is such a blur, but I will try and remember.

Surgery day was Tuesday at 7:30 am. We had to be at the hospital at 5:30 am.Lauren got up at 3:00 because she had to take a shower with antibacterial soap. We got to the hospital and there was a line of people registering for surgery. They gave us a pager to use and paged us whenever they would relay a message to us from the OR. They have 28 ORs in the main hospital and it is very busy. We got called back to the pre-op area where Lauren had to change into a gown and get her IV hooked up. They could not find a vein, so they used her port for surgery. Her anesthesiologist came back and introduced himself. He is a friend of Kristen's and was so nice to Lauren. We are so thankful Sis and Bruce work here and know so many nice people. They needed us to leave so they could put an epidural in Lauren's back and we went to the surgical waiting area which is a long hallway with different seating arrangements. We got a nice, big square area od couches to relax on. My Mom, Dad, and sister, Linda came a little later. Bruce, Sis, Gio, Mark and I were also there. Kristen's anesthesia friends gave us two gift bags. One for Lauren and one for the family. Our bag had bags of snacks and all different kinds of magazines. Lauren's bag had lip balm, lotion, flip flops and a bunch of magazines including bridal ones. I thought that was the sweetest gesture. We took turns going to the cafeteria and Bruce took my dad on a big, long, fast walk to see what good shape he was in. My Dad is 81 and is in better shape than most 50 year old men. I always wear a necklace with a picture of Lauren and a St. Peregrine medal (Cancer saint). I kept my hand on both of those through most of her operation and kept praying and praying. At around 4:20 they paged us and wanted us to go back into a conference room. I thought I was going to have a nervous breakdown about then and I think Sis was about as bad. I was so scared to hear what Dr. Sonnenday was going to say. He came busting in with a smile on his face and said it was a tough surgery, but he was really happy. He had taken pictures of Lauren's insides when he was looking around laparascopically and gave us copies. He removed Lauren's gall bladder, cut out the tumors on Lauren's left side, and divided her liver in two. The left side is supposed to regenerate quicker when this is done. He said she did great and only needed two units of blood. He also removed six of her lymph nodes. He said the tumors he removed on the left were all dead. Her liver looked kind of mangled from all the chemo she has had, but her tumors were dead! He said she will have a CT on Wed. and the second surgery to remove her right lobe will be on Friday. Kristen and I practically skipped back to our waiting area to tell my Mom, Dad, and Linda the great news. I think all of us were crying in the consultation room. The news couldn't have been better. We got to go back and see Lauren in the recovery room. I think it is called the PACU. She was very groggy and complained that her shoulders and arms hurt really bad. She couln't feel her incision because she had the epidural. She had so many tubes coming out of her, I couldn't believe it. I will see if I can remember them all. Arterial line in her neck, IV in port, blood pressure line in wrist, drain on right side of abdoman, bladder catheter, oxygen and epidural. She was taken to the SICU, mainly because she couldn't be on a regular floor until her arterial line was out. They took the IV out of her port because of risk of infection, so the arterial line was being used for blood draws and meds until a PICC line could be put in her upper arm. The SICU is very strange. So many buzzers and beeping. It could drive a person crazy!! They do this thing where every hour or two they come in and raise the bed and roll you and prop you up on the opposite side you were just on. This hurt Lauren so much and she would cry out every time they did it. I felt so bad. They only had two chairs in a room so poor Gio had to sit on this little toilet. I was happy Lauren when was moved to a regular room.

After that every day kind of blends in to the next. Lauren gets better each day. She has already had two different roommates come and go.Her pulse ox was low for a few days, so she has been doing this little machine called an IS that mesures how much oxygen you are taking in. She is getting better at this. She complains a lot of shortness of breath, but that is probably because of pain. She got all of her lines out, the epidural is gone, catheter is gone. She has been going to the bathroom with no problem. She has the drain and the PICC line.

Lauren has not eaten much at all. A few bites here and there. She is just not interested in food. She is really puffy from fluid. She has her legs wrapped with ace bandages to help with the swelling and is taking lasix. She is getting shots of Heparin to prevent blood clots.

Lauren wants peace and quiet at all times and does not want to be asked any questions. She gets really mad if you ask her anything. I had to use tough love yesterday on her because she did not want to do any of her exercises or get up and walk. She got so mad at me and was crying. I told her the only reason I was acting this way was because I loved her and wanted her to get better. Kristen had to get tough with her today and told her she was being so mean to all of us and really needed to get up and get going. Lauren was furious with her, but she got up and walked four times today!! We also told the nurse about her and she must have told the next nurse, because they are telling her to get up instead of asking. Lauren is so stubborn and headstrong that the tough approach is the only thing that works. This is also why she has done so well with chemo treatments. She is tougher than anyone I know. So, I must sit in silence and only talk when she wants to talk. I can't be mad at her for more than a second because it hurts her to breathe and she is so frustrated. I can only imagine how cranky I would be.

Kristen and I helped Wo get a shower yesterday. They have a shower right in her bathroom with a seat for her to sit on. She sat and we soaped her up, washed her body and hair. Kristen even shaved her legs. It was so hot and steamy in the bathroom that our hair got all frizzy and curly. So much for straightening my hair!! I think she felt so much better. Kristen has been so helpful and I will never be able to thank her enough. If she wasn't a doctor, she would have been a super nurse! Bruce is great too. They always come to see Lauren before and after their shifts, and sometimes on breaks. I was so happy Ryan was able to come back with Gio this weekend. He had a very calming effect on Lauren and she really seemed to listen to him. Mark could not come this weekend because he threw up on Friday and had intestinal problems all weekend. He didn't want to risk making Lauren or anyone else sick. He sent Lauren a picture of her buddy, little Penny. She is confused about why we aren't at home and constantly stands up by Lauren's bed to see if she is up there. That broke my heart and I had a good cry because I love my dogs like they were babies. I have a big list of instructions for taking care of them on a door in the kitchen. I think they will be ok.

They want you to get up and walk a lot after surgery. Lauren had a slow start to that because her blood pressure was too low, her heart rate was too high, and she was too drugged up. Sunday was the first good day of walking. She did it four times. Twice around the big square and twice up and down the hall. I'm sure she will do a lot today. My Mom and Dad are coming to visit today. That should make Lauren happy. I'm going to ask today if a therapy dog can come and visit Wo. I think she would like that and it might lift her spirits.

I will try and update more. Thank you so much for your prayers and support. I took some pictures when we were in the surgical waiting area. Until next time...

Love, -Pam



Bruce and Mark.

Sis and me.

Sis looks like she is doing yoga. Haha. Grandma Tommie, Bruce and Gio were deep in conversation.

Three amigos. Bruce, Gio and Mark. Couldn't ask for a better son-in-law and future son-in-law!

Aunt Linda and Papa Ron. Linda was having a hard time and kept crying. She loves Lauren so much and is the best aunt!! I am so happy to have such a caring family. We may be a small family, but the love is HUGE!

Gio trying to occupy his mind. He has been so wonderful and really shows Lauren the true meaning of love.