Forward HO...

I guess having little time to update the blog translates to more time spent with Olivia. Good time at that. It's as if writing that blog the other night was the apex of the bad and we've had GOOD ever since! Livi has been wanting to get out of her room, play in the play room, paint, make necklaces, visit new friends/patients and play games. It's been great for the nurses and other patients/families to get to know who our daughter really is. It has especially been nice for us to have our "lover" back. My dad spent Monday with Livi while I got to have a little me time and go to the gym. Our neighbor's boys played with Aaron while Karen and I grunted my frustrations away. Dad seemed to have a good time with her and actually got to spend more time with her throughout this week. He did finally decide to spend some time at home, and I'm glad he did. He flew out this morning to go home for a week. He's been such a huge help from laundry to cleaning mine and Bill's room, even making our bed and fixing roast for dinner. (I don't even think he made my bed for me when I was a kid!) I wanted to give him some time with Livi and also some space from Aaron. Aaron is at the fun stage of repetitive questioning. I could tell it was starting to wear on dad...I can't say that I blamed him. On top of everything going on here, Monday, Dad also had to put one his dogs down. If I could afford you one guess you would get it right...cancer. Does it ever stop?Monday evening Livi was feeling well enough to walk to PICU next door. She was released from her non-rolling pole (only 2 of the 6 wheels spin), donned a Mickey Mouse face mask and walked through to strut her stuff. There were some parents with their baby who had been in PICU when Livi was there. It was nice to see them smile at Olivia as she shuffled by. My heart broke for them wondering if their baby girl would ever walk. The nurses and doctors all smiled and made a big to do out of her walking through. It was a great way to show them our thanks. Later, back in her room we watched "Ratatoullie" and had a couple visitors from the floor. Dusty and Tealan (2 teenage boys with Leukemia) have been great and say hi to Livi anytime they see her. Whenever we go on walks Olivia always wants to stop by Dusty's room. She's pretty emphatic about it. But when we get in, she clams up...crush? If it is... I say great. One more thing to get her out of the room is simply just one more good thing. Yesterday Dusty was having a bad day and Livi kept saying, "I hope Dusty feels better soon." What a sweetheart. The boys are great and return the love whenever they can. They've both crashed Livi's room a couple of times and played around with her. Later on Monday night, around 11:00 or so, we went with Dusty and another teenage boy named James to the teen room and played Scattergories. It was quite interesting being that everyone was on their night doses of pain meds. Livi had a good time and even answered a couple of the catergories right on. With all her strength and smarts I do have to remind myself...yes, she's only 4! Earlier in the evening I was reading some cards to Olivia that had been sent to her from loved ones. They spoke of Livi's courage and strength and the power of prayer and one mentioned the blessings of the priesthood being restored to the earth. She could not contain the tears that were welling up in her eyes. She started sobbing and asked instantly for a priesthood blessing. I called Bill, told him of the happenings and he came right down. Through the power of the priesthood, he was able to bestow blessings upon Olivia from her Heavenly Father of peace and comfort and strength. I was so grateful for her desire to have a priesthood blessing and her knowledge of what they are and what they're for. And yes...I remind myself...she's 4. There is definately something greater going on here that I am blessed to be a part of.

Tuesday, Bill got off early and was able to spend some time with us at the hospital. (He had been doing protection for Obama while he was in town.) We got to meet a family who's 3 year old daughter had just been diagnased with cancer. They found a tumor on her spine that was about 6 inches in length and ran through towards her stomach. Dr. Bernstein was anxious to get Olivia in touch with this girl to spark a friendship of sorts. As soon as we saw her we knew why. It was our little Olivia, except with black hair. She wore the same scowl on her face that has wrinkled Livi's brow for weeks. Livi noticed it too. She decided to give her a little stuffed puppy that a friend had sent 2 of to "keep her company", she said. The little girl said, "I don't want it." Livi looked at me and smiled, "that's what I was like!" We all just laughed. We sat in the playroom together and beaded necklaces and watched Livi come alive. She was being her chatty little self and even spelled the word "steroid" on her necklace. (It's amazing what they catch on to.) Ever since meeting her, she slways wants to know how Alyssa is doing.
Yesterday, Wednesday, the GI doctors decided to let her start eating again. A VERY low fat diet. She was so elated at the news she actually started laughing! This picture with the cereal was her first food in nearly 3 weeks! So far the diet itself is questionable and nobody seems to be on the same page. For lunch today, and remember this is from the "low fat" menu, they sent up a hamburger! And we wonder why so much of America is obese! UGH! I went to the store and bought nonfat dairy products, fruit, sweet potatoes and nonfat pudding for a treat. Up to date she has eaten what's in the picture below, yogurt, fruit, Rice Crispies and oatmeal. After she eats she complains of stomach pains and that scares me. She's been having good bowel movements and that could just be it, but we're wary, as are the doctors that it could be her pancreas. Yesterday we had invisioned coming home within the next several days. She's been mobile, she's come off most her meds, she's eating...but today we got new news from the GI surgeon. Seems that the C-T Scan finally came through clearly and shows that 70% of her pancreas has died! That's alot. The pancreas has a head, body and tail. Only the head of Livi's is still functioning, but the "plumbing" is not safe. She tubing that carries the enzymes from the pancreas to the intestines to break down fats is shattered. The enzymes can't fully get to where they need to go. If she eats fats the pancreas is going to have to send out these enzymes. The more fat the more enzymes and the greater the chaos will be. Hence the non/low fat diet. All this being said means several things. The GI docs want to keep Olivia in the hospital for the next 6-10 weeks (that is the time they think the pancreas will take to rework itself to insure proper function). That is also the time that it will take for any pseudocysts to form off of the dead pancreatic tissue. If cysts form they will have to surgically removed. With how much of her pancreas has died chances are very high that these cysts will form. (Another way for the body to get rid of the dead tissue is to liquify it and pass it through the body itself.) The last thing in this mess is something that many of you may be asking at this point, non-functioning pancreas=diabetic, right? Well, at least, Livi's chances of becoming diabetic have gone up 50%! I don't even want to think about that right now. Sometimes I wonder if this will ever stop. If our lives will ever be "normal" again. But then again, this craziness has been going on for over a year...maybe this is our "normal".








The music people came again today and Olivia loved it. She shook the shakers and beat the drum and even "danced" in her bed a little bit. What a difference from last week. The music people couldn't believe it. We are grateful for it! In the afternoon she's pretty wiped out, but it's from having a good day!

Through all this insanity Aaron has remained and even become more so, a great kid. He, out of neccessity, but nevertheless has become much more outgoing, social and fun loving. Our neighbors, upstairs and next door, have really stepped in this last week to give my dad more of a chance to spend time with Livi before he had to go home. He has been swimming with them everyday and today even went on a "wee bit of a tramp" (hike) up at Mt. Charleston. I tease our neighbors that when Aaron finally does start talking he's going to have an odd mix of accents: English, Scottish, and New Zealander! He puts his jandalls (flip flops) on his feet after he's gotten his swimming costume or togs (swim trunks) on and they go swimming in the morning or savo (afternoon). They all lovingly refer to him as their "wee little man". I love it and I love them. They keep me grounded and sane. Most importantly they keep me laughing.

A testament of, "we'll do anything to get Livi to laugh." This is a roll of "tape" bubble gum...

JUICY!

Oh, sweet Livi...

When she's happy, she helps the nurses clean her I.V. lines before she's reconnected to her meds. They let her be pole free for some of her walks during the day.

Yes, sweet Livi, oh sweet Livi! She's getting better but definitely letting it be known that she is "NOT HAPPY WITH YOU!" The nurses tell us they'd rather see her yelling than not; because when Livi's not yelling, Livi's sick! Isn't that sad that they don't know the sweet little Livi that we all know and love! I'm grateful that Lachelle is there to help with her tantrums. (Lachelle is a CNA she had her first time in.) It is good to see the fight in her...I have NO IDEA WHERE SHE GETS THE ATTITUDE FROM! I, for one, was never like that!!! :) It must be from Bill. We all know how loud and stubborn he is!!! Hee Hee! If nothing else her tantrums are producing some pretty comical monologue. "Get me out", oh sorry,"GET ME OUT OF THIS FREAKING BED!" or "YOU'RE FIRED" to the nurse, or "YOU'RE THE WORST MOM AND DAD EVER!" at this one I told her that that meant that dad and I belonged together! Or, my favorite thus far, which definitely shows a possible future of being an attorney,(as we were "forcing" her to walk) "I'M GOING TO SLIP AND FALL AND CRACK MY HEAD OPEN!!!" The nurse and I looked at eachother and thought, "wow, that's quite the detailed accusation!" Can you say, lawsuit? We'll make it through. And we'll smile a little more because of it. Don't get me wrong, it definitely stirs up some raw emotions. She told Papa she didn't want to see him anymore and that made me tear up pretty significantly. We know it's her way of telling us how miserable she is. I cringe to think of how I would handle things if I were in her situation.

On a lighter note, while the tantrums seem to be intensifying, they also seem to be shortening and lessening which leaves space where she can actually enjoy herself. Yesterday, some friends from Sacramento stopped to visit on their way to St. George for a family get together. They actually arrived in time for my birthday, Friday night at 11:55pm! Talk about a great friend! Anyways, when they came in to Livi's room, she was having a tough time waking up , we'll say. She wasn't saying anything and just kept rubbing her eyes. Her little friend, Juliana was pretty disappointed, understandably so. Jennifer, the mom, my friend, and her oldest son Jeffrey started teasing Olivia saying, "Don't smile, better not smile. No smiling is allowed in this hospital." She ate it right up. The smiles kept on coming. Nothing more than that, she never spoke or willingly took a picture with her friend and their new matching hats, but she did smile A LOT and so, Jeff, Jen, Jeffrey, Jordan and Juliana, your trip was totally worth it. Jeffrey also did a great job at getting big smiles with his armpit farts! I'm thinking of blowing up the picture and hanging it at the end of her bed!

Today she had the first good time out of her room since she's been there. She exits her room at a minimum of once daily to do her walking, but is never happy about it. I pity the other patients and their families for having to listen to my daughter screech her way down the hallway. But today after her walk/screech-athon I held her in my arms in the hallway. A lot of the kids and parents were congregating in the halls and so we joined them. The general consensus was they all felt badly for her and were mad at the nurses for making her walk! Good people. Anyway, after she calmed down she said she wanted to go into Dusty's room. Dusty is a 17 year old boy with Leukemia. His head is shaved. (Lately I've been encouraging her to count the amount of people with shaved heads.) He is very sweet and has been joining Livi on her walks as she screams through the halls. I will be forever grateful to him. We spent some time in his room and then she wanted to go meet another little girl, who's 3, that has lung cancer. She's bald too. Livi smiled seeing this little girl in the same situation she's in. Having to take the same medicines and the same vital signs. It was a huge breakthrough. After the visits she wanted to have a tea party in the playroom, and then we played cribbage. (Bill was able to be with us today, he brought the tea sets from home.) Neither lasted very long. But we were thrilled with the progress. She also got to have a Popsicle today. After she ate half she said her stomach hurt. We just need to take things slow. Friday was the first time she got to drink water! I just remembered...I didn't post that she had gotten the NG tube out of her nose, FRIDAY! We're still a long way from eating but, baby steps will get us there.

One last thing...Friday morning Child Life services, an organization in the hospital that helps kids adjust to life there, came in with a large tub full of wrapped and unwrapped presents. They had heard that she was having a tough time exercising. Each time she exercises now, she gets to pick a present out of "Olivia's Treasure Box". She didn't want anything to do with it. After exercises on Friday she refused to pick a present. Yesterday she did and today she was excited to unwrap what she had guessed to be a Barbie. She was right!

Bill's with her tonight and tomorrow is a new day. She's supposed to start interthecal chemo (chemotherapy put into her spinal fluid through a spinal tap.) It will be the first of 4 over the next 4 Mondays. There is no concern about this chemo affecting the pancreas but another oral that she's supposed to take is still pending due to the fact that it can affect the pancreas. Dr. Bernstein is working things out carefully.

Thank you everyone for keeping updated and in touch. We love you all and continue to reap the blessings of your prayers!

Better Days

WOW! I can't believe the change of events from a mere 12 days ago. From life support, and multi organ failure to sitting up, standing, walking and at times out right laughter. Yesterday was the first time I had seen her smile (without medical help, aka. morphine) in a long time. She had every now and again smiled a cute peaceful smile when something made her happy, like sitting on a neighbor's couch, but yesterday was HUGE! We were sitting on her bed with her watching Mickey Mouse Club House and me giving her a foot massage, complete with lotion. She suddenly got a euphoric grin on her face and said, referring to the movie, "He just said 'crap'!" I laughed and admitted that it did sound like that but in fact the character had said "drat". She giggled again and said, "It sounded like he said the C word." A few minutes later she smiled huge again when another character said "underpants". It was hilarious. My Aunt Yvonne, who was visiting with us, and I just laughed.

Last night was the last night Angie and her friend were going to be in town so they offered to stay the night with Livi so Bill and I could go out for my birthday dinner with some friends. (My birthday isn't til Friday.) When I left the hospital to get ready for the evening, Yvonne stayed with Livi until Angie and Jacob arrived. Voni said that it was the best she's seen Livi. She said, "It was Livi!" She said they had been talking and Voni noticed the pulse ox. bandaid on Livi's toe and realized it glowed like E.T.'s finger. Voni said, "Hey Livi, look, your toe is glowing! You have a glow toe!" Livi laughed! She actually laughed out loud for a measurable amount of time!!! I wish I could've heard such sweet angelic sounds. Bill and I do not remember the last time we've heard Olivia laugh.

Bill and I had a great time with a few friends out for dinner. It was great conversation, good food, and all in all a fantastic evening being a couple again. We even got to enjoy the pool at 10:00 at night. That will be a blessing of living in Vegas in the summer. I told Livi that when she gets home we'll get to go swimming at night when it's dark. When it gets down to a chilly 95 degrees by 11pm you can spoil yourself like that.

Angie said that the night went off without incident and this morning we started on a strict schedule for exercise. Olivia is a very determined little girl. This morning I was helping her to the bathroom and halfway there she really was struggling and starting to cry. I offered to carry her the rest of the way and she said, "No mommy, I have to do this!" She did, and she walked all the way back too. (None of this without alot of support. She is very weak and can only focus on one foot in front of the other, not so much weight baring.) So I know she has it in her. The trouble comes when O.T. (Occupational Therapy) and P.T. (Physical Therapy) come to work with her. She is strong willed. It's probably how she was able to fight so hard the last couple of weeks. But this fight turns into defiance when it comes to these people and their assistance. She doesn't really show the best...compliance, but she's getting better. This is a picture of her doing O.T. yesterday. O.T. deals more with small motor skills where as P.T. is large muscle groups.

It's really been great to be a part of a great network of people who care. Around the noon hour 2 women came in to do a special music time with just Olivia. The guitarist/singer was magnificent and brought tears to my eyes, along with the woman who came with her. She made words up as she went specific to Olivia. Livi had just previously ridden in a pillow stuffed wagon around the floor. So as the songs played out she lay there eyes closed, hands held close. The lyrics to one of the songs were as follows:

"Don't tell me what to do,
Please don't tell me what to do.

I'm just fine with my eyes closed.

I'm just fine with my hands to myself.

Thank you for all of your help."

It was just perfect. What a special talent she has to beable to put my daughter's unsaid fears and emotions into song. She went on to sing another song where she talked about closing her eyes so she could be brave and safe on the mountain top with the trees. "Beautiful and brave." (We have a poster hanging that a girl in the ward drew of mountains with trees that says, "Olivia the Brave."

After a full morning she rested on my lap to get reaccessed. (They had disconnected her port for about 1 1/2 hrs.) She didn't even flinch although she squeezed my hand pretty tight. With all this excitement, probably the best thing of all was that she tooted, twice! All you ladies that have had c-sections will know that that means we're that much closer to EATING!!! It also appears that the NG tube isn't getting anything out of her stomach, which is another very good thing. They just did an x-ray to check the tube and also to get a visual of her bowels, but things are definetly looking up.

After a restful nap she played cribbage with me and Papa for 5-10 minutes and then rested/watched a movie. She's doing great! And her attitude is improving. When Papa told her Angie had to go home but didn't want to, she started to cry and said through tears, "I didn't want her to either." She'll be back.

Back to base camp

I had wanted to get this picture up the other day. This was Livi's first day out of bed, Saturday. Thanks Gee!

So, where to begin. As several loved ones pointed out, I haven't blogged in a while. Sorry to all my peeps! I love you all too. The last few days I have been sequestered at the hospital. Bill started back to work on Monday so mommy has hospital duty. My dad, Angie and her friend have spent the last couple of days entertaining Aaron, which is going to turn into a bit of a dissapointment being that when Livi comes home it's back to boring days with mom and sis. I fear I'm not going to be able to compete with the vast array of entertainment he's received these last couple of weeks. My aunt Voni has spent the last couple of days at the hospital with me and Livi. Bill stops by on his lunch break and then eats dinner with me after he gets off work. Last night Olivia was moved over to HEMOC (Hemotology/Oncology). That's where Olivia's baseline is. Whenever she gets sick that's where she goes, so all the nurses welcomed her "Home". It was nice to be there, so I thought. It meant that Livi was better/healthier. I rode in the bed with Olivia to her new room. When we got there she opened her eyes, looked around and started crying. It broke my heart. She knows from the last time that she'll be there a while. Last night and today were hard on those of us who were there, emotionally. She was hungry and pleading weakly for food. She even asked for chicken strips and said, "They don't have bad fat on them, they're healthy." She asked any nurse or doctor who came in and asked if they could get her anything if they would bring her a chocolate milkshake. We have a lot of people willing to bring her milkshakes as soon as she can start eating again. The GI surgeon said that could be within the next couple of days. Her NG tube, the tube going down her nose into her stomach has been draining a lot today and he said that could be a sign of her stomach starting to work again. Another thing that has been difficult is her blood sugar levels. They are high then normal then high again. When they are high they have to put her on insulin. In order to know if they're high they have to draw blood but they can't be sure the blood out of her lines is free from any meds that may change the outcome; so on top of everything else she now seems to have become a diabetic. Not really, and the doctors say once the pancreas settles down this won't be an issue. But until then she gets finger pricks. Today she had 3! Two of which were within an hour of eachother. She is such a trooper. She says "OW!" and then falls back asleep.

Today we opened a package from a friend that had "Matilda" the book in it. I wanted to do something for her so I started reading it to her. She didn't even try opening her eyes but she sure was listening. If nothing else to the cadence of my voice. Whenever I stopped she would shake her head no and I would keep reading. After 40 pages she finally decided it was time for us to rest. I laid with her on the bed for a really long time and every time I tried to get out she started crying. I gave up on showering. It wasn't worth it.

I love my princess and know that she is very sad and depressed. It breaks my heart to know that she knows there are other kids that are playing and having fun and going on vacations. But I know this too shall pass and her life will be sweet. All in good time.

Out of PICU

Livi is out of the PICU. Yay! She is very worn out. She only gets out of bed to go to the bathroom and every time she does she wants to try walking even though she is too weak. I say that is part of Rachel coming out in her. Very determined. Rachel will provide a more detailed update later today.

Keep on Fighting

That was then... (the pic of the room is even minus some equipment)

...this is now!

Amazing, incredible,phenomenal! These are just a few of the words that doctors and nurses have used to describe Olivia's progress. We know it as blessings from our Heavenly Father. As Bill wrote earlier, Livi had a good day yesterday and a better day today. I feel like because we were in crisis mode and then critical for 6 days that now everything seems so euphoric. It's so great to read everyone's comments and feel all of your love pouring out to Livi and us. Thank you again and again and again. Today Olivia was sweetly surprised be her Aunt Gee (my sister Angie) getting in to town. She instantly grabbed on to her hand and didn't want to let go. Bill and I stepped out to meet some friends to start our fast and while we were gone Livi told Gee she wanted to sit on her lap. It was the first time in a week that she'd been out of bed. She sat on her lap for quite a while loving the arms that were wrapped around her I'm sure. When Livi was laid back in bed they noticed a grapefruit sized fluid pocket on the left side of her back behind where her port is. For the last couple of days fluid has been seeping out from around the port site. When this lump was found the thought was that the port may have somehow disconnected and the meds being pushed in through the port were being displaced in her back. They shot contrast into the port and took her down to radiology to do a fluoroscope (basically a light that would shine through her skin and illuminate the path the contrast had taken). Everything looked good. They took her back to her room, got her back in bed and...the grapefruit was gone! No one knows what it was. I say that was when a large group of us were starting our fast, about 6:30 pm.

Bill went to stay at the hospital for the night and I got to come home and spend some time with Aaron and my Aunt Yvonne who replaced my Aunt Karen for the next week.

Olivia is only on a couple pain meds, a now and then insulin drip and 1 or 2 other meds. She has both hands completely free so she can start signing again! (The catheter in her right hand came out on its own last night. I was holding her hand and noticed something wet. I told her nurse, Mike and he discovered the Houdini slip!) We are still in PICU but after having such great nurses there I don't know if I'm necessarily ready to leave. Soon though I'm sure.

Thank you for everyone giving there love so freely to our daughter and to us. We could not be doing this without everyone's support. When people ask how I'm staying so strong, I don't hesitate to say, "by what you are all doing."

Day nurses: Bryony on left(Wed. & Thur.). Lisa all the other days!

Night nurses: Sheri and Mike. (Angie, the other night nurse has escaped a photo thus far, but not our hearts.)

Unbelievable Progress

Olivia came off the ventilator yesterday she is breathing well on her own. She is also off most of her medications and is doing well. All of the nurses and doctors are amazed at her progress. Olivia may even be able to leave the ICU today or maybe tomorrow. Olivia slept all day yesterday and slowly should start to be more and more like herself. Rachel will update the blog later with all the details and insight I (bill) just am filling in the basics.

Through the faith of many...

As I sit at our computer trying to figure out what shouts of joy to write and then again how to spell them, I am extremely humbled. All I can say is THANK YOU! Olivia the brave is still in remission! All the prayers, all the good vibes, all the thoughts, all the prayer lists at temples across the country, all the love and all the faith has made our little girl strong. She is definitely one that will be remembered, no matter where the roads lead, as a precious child of God that brought so many people together in a great trial of our faith. And through this, each of us will be made stronger. Thank you!
I sit and contemplate what a miracle has just transpired. Doctors could argue that she didn't actually miss any of her chemo treatments this last week, they'd be correct. But when you stop and think about what her tiny body has had to endure, 6 days ago she was at the gates of heaven, she had multiple system failure, and nobody knew what was in store for her. But despite having to fight for her life, to simply be able to get her heart, lungs, liver and kidneys working again, she also had to be given the strength to continue to fight the horrible war deep inside her body to keep the leukemia at bay...and we did it. We all did it. Every prayer that was prayed, every tear that was wept, every knee and head that bowed, was noticed and felt and we pulled through a very crucial time.
Unfortunately the battle is not over. She is still very sick but is getting stronger. There is talk that she will be extibated tomorrow if everything goes well. The pancreatitis is still bad but not as bad as when she spiraled down. She's off and on insulin depending on what the latest blood sugar levels show. Other than that her medications have started thinning out. Her medications are Fentnayl and Versed (pain meds), Octriotide (for the pancreas), a few anti-biotics, 1 anti-fungal and A-hydrocort (steroid). She's also receiving nourishment through her central line called TPN (Total Parental Nutrition).
I just talked to Bill: the catheter that was in her femoral vein and the site of her dialysis, has successfully been removed. He just finished a round of Physical Therapy with her and he said "I could tell she was using her thigh muscle. But she didn't want me to do her arms so I stopped." We can only work on her right leg for a while until the swelling in her left leg goes down and it's not so painful.
I am home for the night and it feels good to be so. Yesterday, with Livi being so upset I really didn't feel like I could be away for the night. But today was a good day. Dad and I left the hospital at 5:30 and came home to spend some TLC with Aaron.
In closing let me share with you something very special that will be happening this weekend. Starting Saturday evening we are going to be holding a 24 hour fast. In our faith we fast, or go without food and drink, for a 24 hour period (two meals) as a way to show our faith in God so that He may more fully bless Olivia and her doctors. We go without food and drink to show God that we are willing to give up our temporal needs with faith that He will pour out his blessings upon those who we are praying for during the fast. This Saturday through Sunday (starting after supper) we will be fasting for Olivia to continue to be able to fight and make a full recovery from the pancreatitis and also for the doctors that they will know how to best aid/treat her towards this recovery. Also, specifically for Dr. Bernstein, Livi's Oncologist. That he may be lead to the answers he needs on how to further treat Livi for her Leukemia. (One of the main chemo meds can no longer be used as it is what caused the Pancreatitis.) We appreciate all those who would like to join in this fast. You do not have to be of our faith to do so. It is an awesome thing to be a part of something so divine in nature. And I testify to all of you who choose to take part that you will feel the difference in your day. Fasting along with continued prayers in your heart can and will bring about great miracles.
We love you all! Thank you!

Breathing Tests

Today they have been doing breathing tests on Livi where they take her off the ventilator for brief periods to see how she is breathing on her own. They hope to get her off the ventilator within the next 24-48 hours. Her femoral catheter where the Prisma machine was hooked up will be coming out today, so she will no longer be receiving dialysis. The NG tube will be staying in. Her blood pressure has been down a little but has been holding well. Her heart rate has been in the mid 50s but they aren’t concerned. They just say it’s because she is so relaxed.

Her hair is falling out very rapidly. Every time you run your hand through her hair a handful of hair comes with it. Surprisingly though she doesn’t have any bald patches yet, it is just thinning.

Since she is getting so used to the pain medications they have to give her an extra shot of the medication into her IV when she is moved so it won’t cause her pain. The access needle to her port was leaking so they had to replace it.

She is still VERY swollen from all the fluids that were going into her body and the blood that bled out into her body. She has been having negative outputs (meaning she is discharging more fluid than she is taking in) the last day or two but it will take several days of negative outputs for all of the excess fluids to be removed and the swelling to go down. They put her on an egg crate mattress to help with the bed sores that are forming on her body.

Yesterday Aaron went to the water park for the third day in a row! Of course he loved every minute of it. Our neighbors Elaine and Jan took him. Elaine said she wasn’t sure who got more wet, Aaron or Jan!

We'll keep you updated, thanks for everything!

Day 28 Bone Marrow

Olivia had her bone marrow test tonight. Dr Bernstein was going to do a spinal tap and administer chemo to her spinal column but he said she was to "oozy". Olivia is still off the prisma machine so she is retaining more fluids. She is starting to develop bed sores so they are rotating her every two hours. Olivia is in more pain because she has become more used to the pain meds. She will sometimes cry with out making a sound, because of the ventilator, and it just breaks your heart.

Olivia is still maintaining her body temp and her blood pressure is doing well. Overall she looks better as long as you only look at her face. We should find out the results of the bone marrow test tomorrow night. We are hoping that she will still be in remission.

Thanks again for all the support we couldn't get through this without it.

The Prisma Machine

Last night the Prisma machine kept shutting down due to blood clots. They think Olivia developed a clot in her catheter. They decided to give her some medication to help break up the clot so that they can get her back on the Prisma machine. Dr. Bernstein was planning on doing a bone marrow and spinal tap this morning but because of the complications last night they are going to wait till tonight and reevaluate.

A Step in the Right Direction

Overall today was a good day. Olivia is off of her medication that was helping her heart beat, along with the insulin and another medication. Olivia was able to maintain her body temp by herself for most of the day. Olivia is still on the ventilator and is on the Prisma machine. Her nurses were happy with what they were seeing.

Some Time Away

With Olivia still under heavy sedation Bill and I decided to take some much needed time to spend with Aaron. My mom's sister Karen, who came down from Utah to watch Aaron for us, and my dad are watching over Livi today so that Bill and I could play with our son. We took him to a water park that our neighbors had taken him to yesterday. He loved it. It was fun to see him enjoying life so much.

Yesterday Livi had times when she was responsive. At one time during the day she opened her eyes to my voice and answered questions by shaking her head yes or no. Whenever she does this the first question we ask is if she's hurting. She fervently shakes her head no. We ask if she knows we love her and if she wants any songs or stories. She particularly enjoyed looking at a picture of her and Aaron together in a bath from our Sacramento home. I held it up in front of her to see, she reached out her hand, grabbed the picture and pulled it closer. The nurses have put a type of gel on her eyes so that they don't dry out, but when she opens her eyes it only frustrates her ability to focus. (Not like the drugs aren't making it hard enough already.) She'll squeeze your finger if you rest it in her palm and my dad says today she seems even more easily aroused. The sweetest thing was yesterday when she was answering questions and squeezing Bill's hand I nuzzled her nose. We've always given Eskimo kisses to each other and when I gave her one she returned the sentiment. I was thrilled at the amount of muscle/control it took for her to shake her little head back and forth so quickly. Later in the evening when I was saying goodbye I laid my hand on her left shoulder and kissed her forehead. She shrugged her shoulder up, tilted her head and squeezed my hand. Oh, the sweetness of an angel!

Bill stayed the night with Olivia last night. Bill's report this morning was that she remained stable and she is now on less of her heart medication. The doctors/nurses aren't looking so much for improvement right now as much as stability. So, since we're looking at 2 days under our belt of stable I guess we're doing well.

Some of you have been asking if anyone knows what we're looking at as far as time frame. I do not mean to shock anyone but I also am a firm believer in God's Plan. I believe that the sooner we let ourselves accept the His will, no matter what it may be, the sooner the Holy Spirit can offer us the comfort it is meant to give. Last night I asked her day nurse Lisa, who worked an extra shift yesterday just to keep Livi (it was her 6th 12hr day in a row), what her experience with this has been. She's very straight forward which I like. She said that she doesn't see many oncology kids in PICU because the really sick ones go home on hospice. She also said that she's had regular kids with pancreatitis that have been in for a month but they haven't been on ventilators. She ended by saying, she's "never seen a case this bad". This confirmed to me a couple of things I had already been preparing myself for. 1) Livi is TRULY very sick! The worst of the worst. 2) We are probably looking at being in the hospital for a couple of months. About Lisa saying the second thing, the doctors have not lead me away from thinking that, just none of them have said it so directly. I do feel that our doctors are being very open with us, which to me is refreshing not having had quite the same experience with my mom.

Now something that I thought was pretty cool and what I wanted to end with on this post. I've been asking the nurses how they feel about the different doctors that are working with us. Livi's night nurse, Angie, gave me great insight into our Oncologist, Dr. Bernstein. She said that she hasn't worked with him very often but knows that his families are precious to him. She also said that when the PICU doctors are stumped about a patient (not a cancer patient) and they don't know what they should do, alot of the times they bring in Dr. Bernstein for opinions and help. All the staff that we've met agree that he is a very smart man. He isn't shy about needing to find more information out and talking to his mentors, which happen to be the head guys for Leukemia treatment around the world. Rest assured we feel confident in the care that Olivia is receiving.

I will get another post on tonight, whether by myself or Liz about how today wrapped up. By the way, Great job on last night's post Liz!!!

THANK YOU EVERYONE FOR THE COMMENTS THE LOVE AND THE FOOD! Everything's been GREAT!

Condition Remains Critical

Aside from Acute Liver Failure, Livi has remained stable throughout yesterday and this morning – her condition hasn’t gotten better or worse. The doctors took some time yesterday to explain the liver failure and how the liver works. While liver failure is critical the liver is capable of regeneration of lost tissue. Your body only needs a small working portion of the liver to survive. She is still on the same medications and under the same 24 hour nurse care. Right now they are trying to keep her temperature regulated.

Her hair has started falling out. She lost quite a bit of it today. If you’re wondering how Livi is going to feel when she wakes up and realizes she has lost her hair, surprisingly she will be glad. Ever since she found out she was going to lose it she has been waiting for it, surprised every morning that it was still there. Just a week ago from Saturday she said, “Hurry up hair, fall out”.

We’ll keep you updated with any changes to her condition.

Hour by Hour

Thanks to my friend Liz for keeping the blog updated yesterday. I had the chance to come home and sleep last which meant Bill had the pleasure of staying with Livi in PICU. The nice thing about it is Livi wouldn't be waking him up, she's still sedated and will be for the duration of her time while intubated. The doctors are saying this could be a couple of days to a couple of weeks. Basically they don't know, a better estimate of time is simply hour by hour. The doctors said, "right now she is very sick. We look at things at an hour by hour basis. You'll know she's better when we start talking in term of tomorrow." So, last night the topical port that was mentioned could not be put in near her chest, they ended up accessing her right femoral artery. They originally had wanted to keep her femoral arteries for dialysis if needed. But the pic line was finally a success. Later, Dr. Berstein was able to get back from his there and back trip to Santa Barbara (he was scheduled to teach a seminar). When he walked in to see Livi his face fell. I've never seen a doctor care more for his patients. He was very emotional and made us feel so good. He spent time going through all Livi's systems explaining what's going on and what can happen. After he was done I casually asked him about my niece that was just born with a skin patch on her forehead. I guess there's been some debate of if and when to remove it and if it's cancerous. He spent a good 10-15 minutes talking to us about it and looking up case studies on the internet with us. He even said he'd get in touch with some doctors to find a good pediatric dermatologist, talk to them and then get my niece to see him/her. This is just one example of the incredible heart behind and incredibly bright man.

So, through the night Livi was put on dialysis. Not so much for her kidneys, more to clean her blood. This dialysis though will be left running for 24-48 hours instead of the normal 3 for kidney dialysis. They're hoping to get as much toxins out of her blood as possible. Because she was put on dialysis she had two nurses, just for her throughout the night, as opposed to the 1 she had NON-STOP during the day. Lisa was the day nurse and the poor thing didn't get a break. She finally stole away for a few minutes to use the restroom. She didn't even start charting, anything, until 6pm! BUSY BUSY BUSY! During the night they also needed to start another line for more meds. They tried doing an arterial line in her neck but they couldn't get it to accept the meds so they started using the dialysis machine to help administer the meds. Needless to say, Bill really didn't get much sleep. They had to leave the lights on the entire night. They did open up the glass doors that separate her room from the one next door and let Bill sleep in there with the lights of to be close.

I just got a call from Bill with an updated report from the PICU doctor. They said Livi's heart is starting to function more on its own, her lungs are needing less support from the ventilator, her kidneys are working better, the bad news is her pancreas is still self decstructing and now her liver is showing signs of failure.

We'll keep you posted.

Internal Bleeding

Livi has internal bleeding that they discovered from blood draws, they haven't found from where yet. They are redoing her PIC line, the first one didn't make it to her heart. They couldn't get any axilary arteries so they're putting in a topical port above the right breast. She is out of crisis but still very critical. Keep her in your prayers.

Livi on Life Support

Last night Livi got a CT Scan, they found she has Pancreatitis. Through the night her blood pressure kept dropping (at times down to 57/23). They stabalized it, so it seemed. She had a fever even though her body was icy so they started antibiotics. This morning, after 24 hours without pee they put in a catheter. Her breathing was elevated and blood pressure was down again. She was taken to the PICU and within a 1/2 hour was put on life support. Pancreatitis can be easy or bad. Livi got the bad along with an infection in her blood. She did have some kidney failure but they are trying to stay away from dialysis. Keep praying for her, she needs it now more than ever.

Back in the Hospital

Olivia was admitted back to the hospital today for abdominal pain. They are running some tests to see what is wrong. We will update when we have more info.

Day 21 doctor Appointment

Well, it's true...Olivia is in remission! YEAH!!! Unfortunately it doesn't change the course of action one bit. They said that they expect patients to go into remission within the first month or two, the tricky part is keeping them there. This is not to say that all of the prayers from heaven and earth weren't answered. Livi went in to remission after only 14 days, that's a great thing! Very much a blessing. Her blood counts were fantastic! Her ANC, which is the product of a calculated equation dealing with her blood cells was at 1200! It was the highest it's been since diagnoses! Her hemoglobin was borderline of needing a blood transfusion but he decided against it. Dr. B. said that the hemoglobin is the last thing to drop down and subsequently the last to raise back up. Part of me wanted her to get the transfusion just to help boost her energy level, but with any type of transfusion risks are introduced...the doctor knows best. She does have thrush, a yeast infection of the mouth, a side effect of the medications, and also a "regular" yeast infection that was causing her a lot of pain, hence the morphine in the I.V. She was also feeling really naseaus so they gave her a Zofran drip. It helped. Olivia has been quite...intellectual about the whole remission thing. She keeps talking about Grandma and "why couldn't she go in remission. Did she have leukemia cancer like me?" We explain it to her the best we can and talk about how sometimes Heavenly Father needs people in Heaven to help him there. She said, "Oh, he needed Grandma to help with all the kids that have Leukemia cancer?" I wiped a tear from my eye and said, "Yes. Because Grandma is in heaven she can help all the leukemia kids all the time, instead of just helping you when she comes to visit." Livi smiled and replied, "That's good." That is good huh? It doesn't make everything all better, but it sure does give a since of much needed peace.

Yesterday, Wednesday, was a pretty good day all things considered. We had scheduled Livi's appointment in the afternoon so that I could take Aaron to his gymnastic class. Livi was so anxious to spend her morning with Elaine and Jan that she ended up going over there 1/2 hour before we left for the class. She seemed to have had a great time as did I with Aaron. WHEW! He's quite the kid. SOOO much energy. Wanting to be here, there and everywhere all at once. His regular teacher wasn't there and since I only went the first time I didn't know what was really going on and neither did the sub but Aaron had a lot of fun, I did too. It was fun to spend that time with him.

REMISSION!!!

Dr. Bernstein just called and said, "Her day 14 bone marrow shows her in remission. That's less than 1% in her bone marrow." Needless to say we cried tears of joy. Even Livi! She totally gets it. We don't know exactly what this means for her treatments. We'll know more tomorrow. We do know she will continue on some sort of regimen for the 2 years like planned. We just don't know how it will change, if at all.

"The days seem to fly!"

This is a statement that Bill and I have said to each other quite often as of late. Since Olivia was diagnosed it does seem like the days are flying and we can't quite figure out why. Perhaps it's because we never really seem to have complete down time. Even right now, I force myself to update the site for everyone who logs on, but also for myself. I'm finding it's a great way to journal a little more in depth than I'm used to, and that's a good thing. And again, perhaps the days fly because it's broken into routines that seem daunting and unforgiving. Much like having an infant all over again. An infant, as all of you well know, doesn't do much more than eat, sleep, poop, spit-up and cry. My infant's 4 years old! And don't get me wrong, everyone that has ever had the opportunity to care for a newborn knows how rewarding/satisfying it is, and I feel the same. Often times, I have woken up with Livi laying next to me in bed, Bill has left for an early morning run, and I gently stroke my daughter's cheek. Deep inside I yearn to pull the covers off of her and see a healthy baby girl who is full of life, happiness and joy. I swiftly shuffle through the dreams of what a wonderful day we could have riding bikes at the park, chasing after a ball, or climbing across the monkey bars. I think, "Maybe if I close my eyes tight enough, wish hard enough, or just scream loud enough, this burden will disappear and all will be as it should. But, alas, the slumbering princess stirs, her calico eyes open to reveal dark sunken circles and a look of pain. A simple look from her seems to plead so deeply. "Please help me, please be careful to not hurt me" she says. And out of bed we slide, ever so carefully as not to hurt her frail body. Reality has sunk in for yet another day.

WOW! That was a good cry!!! Whew, okay, on we go. Another thing about newborns is night feedings. "Of course you don't have those with a four year old!" one might say. Oh, but you would be wrong. For all of you who were up feeding your own little ones, or who were just up for the sake of BEING INSANE at 1:30 Monday morning, you should've dropped me a line. Olivia started calling for Bill so, not knowing what exactly she needed, he went running (if you call stumbling through a dark hallway with your brain in the latest dream you were having, running) to Livi's room only to find her propped up on the living room couch. "I'm hungry!" Dr. B. did warn us that this day would come. Since Bill has to "work" during the day, I got the night feeding shift. At first she wanted a "turkey taco with avocado salsa" but the turkey was gone. I love my daughter, but there was NO WAY I was going to dethaw and brown turkey meat at 2am!I talked her into a hot dog and some potato salad. As she sat there scarfing, I prayed that this could be a meal that she could "please keep down for a change". (The picture on the right was her 2nd bite. I realize it's a bit graphic, but the first bite tasted really good and she was gonna get the hot dog with everything she had!)

The night turned out just fine. She woke up the next morning just fine and actually wanted another hot dog for breakfast! At this point I feel a need to talk about her size. These pictures may be very hard for you to look at (they're hard for us to see too). Olivia is very thin and has extreme muscle atrophy. Please know that Dr. Bernstein is fabulous and we trust in everything that he is doing. We've had great help from friends on ideas of what to eat to gain weight back healthily and not just to eat pointless calories which won't help her. Last night a friend from church brought over a whole bag of groceries with great healthy fatty foods, packed full of protein and vitamins and other great stuff. Livi loved it. Today we were enjoying some "chips" and spinach artichoke hummus and she asked, "Is this a healthy fat or a bad fat?" I told her this is a very good fat that will help make her strong. She said, "like avocados?" What a smarty pants! So,...we're working on it. She even still asks about the exercise aspect. Bill walked with her to the pool on Sunday to stick her feet in and change the scenery, while Aaron and I attended church. Today, she wanted to go again. I found her putting sunscreen on before I even mentioned it. I offered to carry her if she got tired but she refused. She clenched her tiny hand in a fist and said, "No! I need to exercise." She can't get up any type of step without assistance and if she becomes the slightest bit off balance she falls. (This has happened a few times and scares us all very much.) We are proud of her and grateful for all the strength of her heart!

Olivia is showing an interest in getting out more. Yesterday our neighbor, Elaine watched the kids so I could run some errands. I got home and Liv took a nap. When she woke up she was out the front door and to Elaine's before I even knew she had left. I explained that she wasn't home and she started to cry. She was determined though and started tramping her way over to Karen's appt. It's upstairs though, so when she got to the bottom of the stairs she stood there crying. I carried her up, with Aaron in tow and had a nice visit for a bit of the afternoon. Livi didn't say much if anything at all, but it was good for her to get out.

Speaking of getting out...Bill and I got to go out Saturday night. A great friend from church and her daughter, Hannah (who had actually babysat the kids before) came over and sat with the kids for the evening. It was so nice having a mom here to help Olivia. As I was explaining Livi's drug regimen to Denise I laughed and told her she'd be a certified pharmacist by the end of the evening. It was great. Bill and I went to a place South East of town called The District. It's an outdoor shopping mall with live music and even a movie at dusk. We didn't stay for the movie, but we enjoyed the band, or at least tried to. Lots of people were dancing along to the music and having so much fun. Of course there's going to be a blond little girl about Livi's age having the time of her life...needless to say I couldn't stay. Bill wrapped his arms around me and we continued through the shops. It really was a fabulous evening.

This picture I just couldn't refuse. Aaron has been such a...(sigh) funny kid. Considering all the chaos in his new little world, he's been doing great. He loves to get right in on the action, as is obvious by this caption. Today, a great friend from church, who just had her 3rd baby a few months ago, came and picked Aaron up for a play date. He had a ball. Thank you Suzy!

Thank you ALL for EVERYTHING you do to help us feel loved and supported. Keep it comin'!