What a GREAT DAY!

Well, Livi's "day 15" appointment was today. Bill was able to take time off work to be there, thanks to all the help from agents across the nation. (They've been donating their vacation time to him!) She was scheduled for a bone marrow test/biopsy and an IV chemotherapy "push". (the chemo they use for it is Vincristine.) She did just fine once the Benadryl calmed her down. Dr. Bernstein is very optimistic with how things are going and as always was more than willing to spend what time we needed in asking questions and voicing concerns. He makes me laugh. He's one of those guys who you can just tell is sooo smart but also knows how to zone out. While he was waiting for Livi's drugs to take effect he went out onto a couch and "took a nap". During the procedure he laid his head on the pillow with her, rubbed her head and sang the "Sing a Song" song from Sesame Street. (His assistant was doing the actual procedure.) We were out of there within 3 hours. Sweet little Aaron spent the morning with our dear neighbors, Elaine and Jan, who are in these pictures. A few months ago I signed Aaron up for a "mommy and me" gymnastics class as a way for me to have some one on one time with him. The classes are on Wednesdays, and since that's when Livi's chemo treatments fell it's turned into "the cool neighbor and me" classes. Elaine is so fantastic. It's such a blessing to us that she hasn't been able to find a job that suits her and they don't have children. (They just moved over from England the beginning of the year.) Driving home from the appointment today I saw a cute couple pushing a stroller on the way to the park. It was Elaine and Jan pushing Aaron to the park for a picnic. They even had a Frisbee and a kite that they had bought for him while they watched him the week Livi was in the hospital. Salt of the earth!

Later in the day, after naps, we all went outside and enjoyed flying kites, playing ball, and riding bikes. We feel so blessed to have the "family" here that we do.

Life as we know it

What a great way to spend the afternoon. On memorial day, Livi was feeling ambitious and decided to give the park a try. Aaron, of course, is always willing and waiting. So, we bundled Liv up (loss of all fat = cold all the time) and headed to the soccer park. I like this park the best because it has a shade canopy over the play equipment. Aaron ran around and had a blast while us girls sat on a blanket and read stories. Watching Aaron, Livi gave into her desires and attempted a slide. She did well although she exuded more energy getting up the stairs then she has in over 2 weeks. (It nearly wiped her out.) But she smiled on the way down. It was great to see some life get back into her calico eyes!

It's been fun to see the kids start to play together again. Livi will ask me, "Mom, what can I do with Aaron?" or "Can Aaron and I go outside to play ball?" One morning I was getting ready and

found them both in my bed each with a copy of the Book of Mormon in hand. Aaron had found the books and passed them out before getting all comfy himself. What a sweetheart. He's always so concerned with Olivia and her well being.

The steroids that Olivia has been on, as part of her treatment, have been taking affect. She has her fits of rage, which is "normal", so we're told (I just love that I have a legitimate excuse for totally "normal" 4 yr old behavior. "My kid's tantrums are medically induced...what's your excuse?" ) The funniest thing about it though is the way we've decided to discipline. And when I say "we" I don't mean Bill and I. When she starts raging I put her in her room and tell her when she stops screaming I'll open the door. Well, the door can't be locked from the outside, and she'll just come out screaming, so while I'm putting her in her room, Aaron gets my exercise tubing so I can more or less tie her door to an adjacent one to keep it shut. It cracks me up. Sometimes Livi will be getting worked up and before I'm even considering her bedroom, Aaron will go to the exercise closet and start dragging out the bands!!!

The other side of the steroids are uncontrollable appetites. Unfortunately that has not been a battle we've had to deal with. We're on quite the opposite end of the spectrum. She is consistently losing weight and is so thin all her clothes hang loosely. This annoys her, and she complains that her clothes are "too big". I tried going back to her 2T and 3T clothes, but that works even less. They're still too baggy AND they're too short! I feel that I've shot myself in the foot on this issue...let me explain. I've always tried my best at teaching my kids to be healthy eaters. The other day I was trying to entice Olivia to eat something so I was offering, cookies, brownies, ice cream, pudding, grilled cheese sandwich, anything! My eyes bugged when she said, "No mom. I need to eat something healthy. If I want to be healthy, I need to eat healthy."!!!!! AHHHH! (I know my siblings are laughing at this!) Later on, that same day, she said, "Mom, I want to go to the gym. I need to exercise my body." Is that my little girl or what!!! She makes me PROUD.

Weekend Report

What I love...some things never change. I have this same picture of when Livi was just a few months old. Sunday morning is a great time to spend with daddy!

It's been a while since I've updated. Saturday was nice and rainy here in Vegas. Considering the amount of rainfall I'm sure we maxed our yearly rainfall totals. Really??? I don't know...it rained a lot! Anywho...we all attempted a trip to the store, we thought it could do Livi some good to get out of the house. She was a trooper and held on as long as she could. She picked out a really cute pink camo hat that I'll have to adjust the size a bit but it'll work. On the way back to the car she threw up a bit (thank goodness for all the rain:)). Later in the evening we went to the McMillan's house and even made ice cream. Livi stayed on the couch most of the time, but did get excited to watch Todd and Ben play Hullabaloo. She even joined for a little while. The most fun of the evening was to watch Aaron play with the boys. He was in absolute heaven. The boys are 7 and 2 and very much boy boys, if you know what I mean. Keeping in mind that it was pretty cool out, the 3 boys decided to play with the ice that was left over in the ice cream maker. Ben, the younger of the two, didn't care for it much, considering it was salty, it was too cold for his liking and quickly came to mama to warm up his hands. Todd, the oldest did what older boys do and tried different experiments like throwing it, or licking it, or my favorite, sticking it down the little one's diapers!!! Ben didn't like it. Aaron, I think I mentioned before, was in HEAVEN! Everything Todd did Aaron relished and did more. He would not stop SUCKING on the salty ice and then started throwing the ice, then put 1 and 1 together and would put the ice in his mouth, run to the grass and spit it out. None of the boys were wearing shoes, and Ben was actually in only his diaper at this point. Aaron, on one of his passes slipped and fell flat on his stomach. He started to "cry" (most of you know, Aaron doesn't "cry" when he gets hurt as much as he whimpers). He picked his face up off the concrete patio, looked inside at all of us adults giving him pouty lips, looked down at what/where he was laying stuck out his tongue and...yep! You guessed it...he started licking the salt water off of the cement! Yes Bill and I are so proud. Our daughter was reading at age 3 and our 2 year old son licks water up off the ground. It was great! I will never stop smiling when I think of that moment in time.
Unfortunately the evening ended on a sour note...let's just say our friend could've not cleaned the bathroom before we came, because we ended up sanitizing it before we left! Poor Livi.

Sunday was a nice day, besides the "postlude" of breakfast on the floor. (When your little girl has breakfast cravings of Top Ramen and chips and salsa, it's hard not to give in, but man do we need to invest in a good carpet cleaner.) Sorry about the graphics. You mom's can appreciate it I'm sure. :) Livi's Sunday School teacher came over after church and read a Curious George book to her and a couple other friends stopped by to give Bill and I certificates for a night on the town. Livi was very excited when an agent from Bill's office showed up with dinner from "the restaurant with the big horses" (P.F. Changs)

Thank you Sister Whitbeck for helping Olivia feel so carefree!

Una mas

Today was...whew...one day down, how many more to go?! We started off by going to a check up appt. with Dr. B. to get bone marrow and spinal fluid results, also to check her blood levels. It was the first time that Livi's port was going to be accessed while awake. We were a bit nervous to say the least. Bill has gone back to work, so I took Aaron upstairs to our neighbor and loaded Livi's port site up with "magic cream" stuck the cellophane on it and headed off. Bill was able to meet us at the office and we both were able to help Livi get through the fear. At one point, through rapid breaths she asked me to sing her a song. "I love to see the temple" is her favorite so I started singing and the nurse asked, "do you go to primary?" It's so nice that Heavenly Father has his angels everywhere. :) The "poke" happened and then Livi said, "when is she going to do it?" The nurse, Wendy was great. She even let Livi switch out the viles to fill up with blood, which to our surprise, she loved. Who knows, perhaps we have another "vampire" in the family huh Gretch!? The doctor was pleased with the counts and then gave us the test results. The spinal fluid is still clear, YEAH! and the bone marrow count has gone down. The original test showed 80% of the marrow as being leukemic, it's dropped down to 10-15%! That was great news. That will be followed up by another bone marrow test next Wednesday followed by IV chemo. (2-3 hours in the office. All the goodies that were given are definitely going to come in handy over the next couple of years...lots of things to keep her busy.)
We got home at noon and had a good lunch. Aaron and Livi split an egg sandwich and then both took a nap at 1:00. Nice for me to get a real break! Aaron woke up but Livi kept sleeping. An agent from Bill's office brought dinner, Livi woke up looked around, got resituated, and went back to sleeping. She did that one more time, but ultimately didn't wake up until 7:45 pm. Bill was still at work doing arrests and had no plans of being home anytime soon which turned out to be rather unfortunate. Livi had a craving, chips and salsa. (She is so thin that no matter how odd the craving, I don't question it.) She had 2 maybe 3 bites and then commenced vomiting all over the couch. I ran her to the bathroom, set her up at the throne and went to get a hold on Aaron not knowing what he would do with the mess. Thankfully I was able to call our upstairs neighbor, who might as well be my guardian angel here on earth, she does literally watch over me( being that she lives above me) and she came down within the minute. Se got Aaron to bed and she left to get Zofran. It's a prescription anti-nausea med that Livi says, "yum that's good!". Finally, a medicine that tastes good!!! 10:30 came and Livi's night in shining armor, literally, came through the door. (Bill had his "shining" badge hanging around his neck.)
Silver Linings of the day: because Livi slept all day I was actually able to read a book for some time and take a 20 min. nap, and get all the chores done AND bake some banana bread! WHEW! Also, I got to spend 1-on-1 time with Aaron. AND when steroid patients are sleeping they can't have their mood swings, a very good thing!
The hard part was watching what seemed to be my mom all over again. One day at a time...we'll make it through.

Home Sweet Home

Yes, we've made it home. We made it home to a freshly sterilized house (thanks to dear friends from church and neighbors) yesterday, Wednesday, around 3:30. Livi was pretty wasted but started to move around after about an hour. She had received a bone marrow test, spinal tap, spinal chemo-therapy and an IV push of therapy all within a few hours of eachother. She was wiped!
When Aaron awoke from his nap he was elated to find Livi in his house. She got off the couch and started chasing him around, "I'm gonna get ya"! The sweetness of it all brought tears to my eyes. She tired out quickly and then Aaron proceeded to bring book after book to Olivia so she could read it to him. Very sweet and rewarding as a mother to see such love.

Livi's Latest

As I sit here in the sunlit hospital room, I look at our little Livi Love lying peacefully in her hospital bed. 1 week and two days has been a long time. She is frail, not quite reaching 30lbs, puffy chipmunk cheeks, from the steroids, and dark circles under her eyes tell a story of the difficult last couple of months. But she is BRAVE and knows that Heavenly Father is real and is there to help her. The most difficult thing a mom could ever hear was spilt from Livi's lips the other night in prayer. "Bless me to be brave so the pokes won't hurt, and bless that I can be healthy and go home from this hospital." It broke my heart, and at the same time made me want to rejoice to know that she knows Christ can carry her burdens and she's not alone.

Olivia received her "peg legs", as the other kids refer to them, on Sunday. They are an intramuscular chemo-therapy shot, one to each thigh, done simultaneously. The actual name of the chemo is Peg asparginase (Bill calls it the asparagus shot!). This shot will be given 2 times during therapy, unless she was allergic, then she would have received shots every other day! Thank goodness she wasn't allergic! She did really well and, as the cna recommended, screamed as loud as she could when it happened.

Sunday night, because her hemoglobin had started to fall, she received her first blood transfusion. Hearing Dr. Bernstein tell me that was a blow. It was an awkward reminder of the position we are in. He assured me that there was nothing to worry about, especially since the blood wasn't from Las Vegas. (If your wondering what that's about, google blood scare in Las Vegas.) Besides the night nurse having some issues getting the transfusion set up, it went well and Monday we did see a lot more energy out of Livi. It was a welcome change. Even her appetite is beginning to increase. Although we don't quite see the demand for steaks at 2am (which Dr. B. promised will come) we'll celebrate her finishing most of a taco bell burrito.

With the transfusion came another cbc with differential. (cbc=complete blood count) Dr. Bernstein was very pleased...when she came in on Mother's Day he found 4 blasts, or leukemia cells, in the smears that were taken. After the transfusion he found NONE! Now, that's not to say it's out of her blood, it just means that it's getting harder to find because there's less of it. (Specifically why it was never found in her blood tests previously.) We are very happy with that news!!! Tomorrow, Wednesday, she has another bone marrow scan, this one I will definitely NOT be a part of. (The last one I was unexpectedly caught in the room during the procedure with no where to turn except a storage area faced with glass panels which gave me a perfect view of the "coring"action that was taking place on my daughter's backside!) Anyways, If tomorrow's scan shows less than 5% of blasts in her marrow she gets to skip the day 14 bone marrow! Keep us in your prayers

Even with the test in the morning, tomorrow will be a good day. Livi's due to be discharged! As long as nothing changes or SPIKES! Hopefully next time I post, will be from the comforts of our home with ability to post beautiful pictures.

"Do you have any family in town?"

This is a question that is asked of us by everyone. Social workers, nurses, cna's, doctors, childlife specialists, foundation workers, chaplains...(that pretty much covers it). The answer is of course that all our family lives out of state but with all the love and support that's been given I'm thinking of changing my answer. Maybe I could ask them to define family. Our ward and Bill's work, which I like to refer to as our second ward, have been fantastic.
Several of the agents in Bill's office are LDS and took it upon themselves to get in touch with our R.S. and set up a meal/dinner schedule. Then, when my great visiting teacher set that up, Bill's office grabbed the riengs and took over the entire first week. Gotta love those type A personalities. I guess that's why they're in the Service huh?! They've been great. Yesterday a few agents stopped in, Ken and Kristi and asked if there was anything we needed in particular. I mentioned how with Livi's sleep schedule being off she's missing her favorite show in the morning, Mickey Mouse Club House, and Bill couldn't find it on DVD. Today, Tuesday, after Ken brought Lasagna for dinner, which Livi ate 2 pieces of for lunch (thanks Ken) Kristi came with the Mickey Mouse Club House DVD. Surely she used her training to search and sieze the highly covitted dvd and our gratitude goes out to her. As it does to everyone.
Our ward has been fantastic. From the awesomely powerful priesthood blessings that have been given, to the overcrowded window sill, wall, bookshelf and foot of the hospital bed with stuffed animals, pictures, cards, books, crayons, stamps and...love. We will never be able to thank everyone enough. Just know, that when you see Olivia smile, you had some part to do with that joy. A dear friend asked me the other day, "So when are we shaving?" "Shaving?" I asked. "Yeah, when is the ward going to need to shave their heads? I'm gonna!" 7 weeks was my reply. I love that I don't even feel the need to reject the love that is being poured over us. It is so freely given. It is a constant reminder to me of the love that Christ has for us.
Sunday was also a very special day. The sacrament was brought to us by great home teachers and with it came 4 other loving unexpected ward visitors. I didn't know how Livi would connect with the sacrament but...she did. It was great. So special.

So, ask me again. Do we have any family in town? More than you could imagine!

Slight Set Back

Livi was doing well and set to go home on Sunday, the 18th, but Saturday evening she spiked a fever of 103! I've been so paranoid about fevers because Dr. B. said anything 100.5 and higher is a trip to the E.R. They drew blood, through her handy dandy port, "No more pokes!" and got her fever down no problem. They never did find why the fever but the simple fact that she had one meant 2 more days observation in the hospital. This too had a silver lining, or several for that matter. Saturday night I felt ill and had to go home...yes, I went home. Sunday when I came back I wore a mask because I wasn't exactly sure what was going on. (turns out it was probably just a combination of lack of nutrition, excercise, sleep and fresh air.) By the afternoon I was feeling fine. I stayed with Livi Sunday with my sister, Angela, who had just flown in to town, and Monday morning Bill called saying he had thrown up all night. Thank goodness for that fever!!! See, silver linings everywhere you look!!! Both Bill and I are feeling back to normal strength besides the bit of softer tummies we are aquiring; me with lack of grueling workout routines and Bill's new friend, the self-service soda machine 10 yards away!!! He officially told me he's done with soda today. We'll see. He did turn down my offer for a bite of the Snickers Ice Cream bar Livi and I were sharing.

Silver Linings

I've been wanting to post more but have been reluctant because I don't have the ability to download pictures from the hospital, but any info is good info, or at least better than none! These next several blogs may not have a particular order but I wanted to break them down by titles because...I can! :) No. It's just things that have been running through my mind.

When Bill got hired with the service and timing of the whole thing with training and moving and my mom passing away I couldn't see the big picture and know that I still don't in it's entirety, but I get glimpses and oh yes, they are definately sweet.
-The biggest one that comes to me because of Olivia's diagnosis is the fact that we chose Las Vegas over San Francisco, San Jose, and Las Angeles. Why? you ask. I strongly believe that we easily would have been placed in the care of a pediatric rheumatologist and Livi would have gone forward being treated for JRA. But, becuase there is such a "lack of good healthcare", there aren't any peds. rheumatologists in Vegas and we were put under the care of a Pediatric Oncologist. Who, by the way does not fit in to the whole generality of Vegas Healthcare.
-Also, although there are moments of gut wrenching pain when Livi cries out for her Grandma. No matter how painful, I do believe, in my heart of hearts that having her very own gaurdian angel to watch over her, and who went through everything that Livi is going through is a tremendous blessing. Our family has no doubt been through a lot, but I know that with the trials of this past year and learning how to completely rely on the spirit...that's how we will make it through these next years to come. Talking to a friend, she mentioned that God wasn't done with me. I said, it's definately one heck of a refiners fire. I have a different perspective on it now (1short week later). Last year was my course work, this is my final!

As I really start to think about the path that has brought us to this point I am nothing short of amazed at all the people that played a role. My sister-in-law, Kristi, put me in touch with her cousin Stephanie when we moved out here. Her family has been great friends to us and put us in touch with the pediatrician who had ties to the Hospital (UMC) that could get Livi in right away, who put us in touch with Dr. Bernstein who took us away from UMC and brought us to this wonderful Hospital, Sunrise Children's Center. I guess I need to say, "Thank you Kristi"!

Diagnosis

On Monday May 12, Olivia received a bone marrow test to rule out Leukemia. On Tuesday we found out that our little girl has Pre B-Cell Acute Lymphoblastic Leukemia. I will borrow a definition from Wikipedia for help in explaining what that is:



Acute lymphoblastic leukemia (ALL), is a form of leukemia, or cancer of the white blood cells.
Malignant, immature white blood cells continuously multiply and are overproduced in the bone marrow. ALL causes damage and death by crowding out normal cells in the bone marrow, and by spreading (metastasizing) to other organs. ALL is most common in childhood and young adulthood with a peak incidence at 4-5 years of age, and another peak in old age. The overall cure rate in children is 85%....



On Wednesday Olivia had a surgical procedure to place a "port" so that she can receive IV Chemotherapy treatments. Over the next 2 years Olivia will receive multiple forms of Chemo to help her fight this disease.



The doctor also tested her spinal fluid for Leukemia cells and luckily found none. Olivia started Chemo on Wednesday and is already feeling better. She has been able to walk without pain and even has enjoyed riding a tricycle around the floor.



We have all been receiving tons of support from friends and family and appreciate every bit of it. Even when Livi is feeling down and doesn't seem responsive to visitors, she always smiles when talking about the many people who have come to visit...and write in her princess diary. (We are having visitors all take a moment to add a line to an on going story about "Princess Petunia".)

In the beginning...

To be truthful it started in January as we began to pack up our house in Sacramento, Livi had a hugely swollen lymph node on the right backside of her jaw. Dr.'s passed it off as some type of infection that was "being taken care of". The lymph node receeded several weeks later. Jump ahead to Easter, the lymph nodes are swollen again and she is having right knee pain that wakes her up at night, followed by days of non-weight baring and "great" moods to go along with it. :) She was treated for Strep (not the throat kind) and x-rayed but nothing more was found between the pediatrician and the pediatric Orthopedic. These cyles kept happening over the next 4 weeks. (Their original thought was growing pains. It seemed to fit at first.) Then, her right knee started to swell. The Orthopedic and pediatrician collaborated and sent us to the E.R. She was admitted quickly with a "running diagnosis" of Juvenille Reuhmatoid Arthritis. Since there aren't any pediatric reuhmatologists in Vegas, we were set up with Dr. Johnathan Bernstein, an Oncologist/Hemotologist. He started treatment for JRA with anti-inflamatory meds. Her lymph nodes were still present but the type of JRA being considered was "post stephalacacous" so that fit too. Keep in mind at this point, Livi had had multiple blood tests all of which were very normal except for elevated "SED" rates, the amount of inflamation in your blood. Normal for her is 15, hers was 130! After a week of Naproxen things were not improving. The pain was moving through her joints. Classic JRA. Her ankles were tender, her left arm (she is dominantly left handed) was out of commission because her elbow hurt and then her left knee. All this time, still "great moods" and night wakings followed by long sedintary days. After a week of treatment we started pretty much round the clock Tylenol with Codine every 4-6 hrs, and it wasn't cutting it. We had more blood drawn- normal. MRI's-normal. Mother's Day her left knee swelled to the size of a baseball and the Codine WAS NOT WORKING! I called Dr. B. He told us to take her to Sunrise Children's Hospital of L.V. and he admitted her.

These pictures are from Livi's first hospitalization at UMC. It was so hard on everybody. Livi was getting pokes every few hours and nobody seemed to think her pain was as real as it was. Aaron wasn't able to come visit so Bill and I snuck Livi out one evening. He pushed our hands off of the stroller and started pushing Livi towards the exit!  The crib...because of Olivia's age she was automatically admitted to a crib. I took one look at it and laughed. No way was she sleeping in a crib! I had to sign a consent and they quickly got us a bed. (Thank goodness too, where was I supposed to sleep?!)