First day of Kindergarten

While we were in Redding Olivia had a very special opportunity! Her cousin Chandler, who attends kindergarten, invited Olivia to come with him to school. (Gretchen, helps out in the 

classroom on Thursdays, and so the teacher agreed to let Livi come with.) It was so fantastic! She loved it! She came home with books that she had made and Math worksheets that she and her partner (Chandler was her partner) had worked on. Gretchen said it was hard to keep her eyes dry as she watched her son ever so lovingly look out for his little cousin throughout the day. Chandler definitely had his hands full trying to keep Livi on task. She would get so caught up watching the teacher, Gretchen said that Chandler had to make sure she was copying down the work properly and staying on the right page. Chandler had double duty!

When they came home Chandler told me that some of the kids had been staring at Livi. I asked him what he said to his classmates and he matter-of-factly replied, "I told them that the medicine she has to take made her hair fall out." At the time I thought it was a great response, in retrospect I wonder how many of those kids won't be so willing to take their cough medicine or vitamins next time. Friday, when Chandler and Olivia woke up, at separate houses mind you, both of them asked if Livi could go to school again that day.  

I'm so grateful that Livi was given this opportunity to be a part of something that she is sooo ready and excited for!  Thanks Chandler, you're the best!

Unexpected Trip

So Bill was in New York for a week and the kids and I flew up to Sacramento for a final destination of good ole' Redding, CA. Bill's step-grandmother Mary, Tiger's mom, had passed away on Halloween's eve and the services were to be held the 15th of November. We had not planned on going, not being able to afford a trip like that, until Susie, Bill's mom, bought us tickets and we were on our way. Because Bill was gone for the week she suggested that we come for that time and I'm so glad we did. We don't have the heavy picture load to show for it but we had a great time. Besides the unfortunate circumstances, it was nice to see everyone together again, and to be there amongst the raw emotions. It was a bit difficult during the wake to hear Mary's daughters talking about their mom. It reminded me of how much time I missed out having with my own mother, but it was nice to feel of their love for their mom.

The kids and I arrived Tuesday the 11th and my dad picked us up from the airport. Hearing my kids scream "Papa" will never get old for me. We enjoyed a stop at Sonic before heading on our journey northwards. The week was filled with visits to friends and family as it always is whenever we go to our old stomping ground, and yet however often we go, and no matter how long we stay, it never seems to be enough time to see everyone we'd like to. We were able to spend good quality time with my side of the family at pizza, for dinner one night and at the park. Angie and I came up with a brilliant plan to reserve the party room at Round Table instead of going out to dinner at a regular restaurant. It was GREAT! The kids were able to play around and the adults...well, we actually got to converse one with another! What a fantastic idea! (Highly recommend it to anyone getting together with a group of families.)

Bill was able to fly in from New York Friday night and drive up from Sacramento with his brother, for the services the next day. It was nice to have time as a family again and to all travel home together. It was the first time the kids were able to fly with their dad! It was nice to sit across the aisle and look on for a change. I was a little confused though...Aaron was being really mellow. I told Bill it wasn't fair and that our rambunctious child was not normally this calm. He just smiled and said, "Yeah right!" Oh well.

Young Faith

It's been some time since I've updated this site to what it was initially intended for, Olivia's conditions. That being said, there is much to be said.

Olivia, since her hospital stay for the month of June, had been on TPN at home. To administer this to her would require her port to be accessed and TPN (or her "nutrition") to be administered nightly over a 12 hour period.  Initially she was on it for every single day of the week, for the full 12 hours and then after several weeks she was weened down to 10 hours a night. The doctors found this therapy to be necessary because of her troubled pancreas (from the severe pancreatitis that had put her into multiple system failure.) Because they couldn't get a clear view of her pancreas on any of the scans the initial thought was that she only had 30% of her pancreas left. They feared that any fat intake would cause her pancreas to secrete the enzymes it uses to break down the fats, and put stress on the organ. Any stress meant possible formation of cysts and so to avoid that she was put on a very restrictive diet of zero to very low fat. (I took it upon myself to really do all I could for this and only allow 10g of fat per day. It actually wasn't too difficult.) 

In September she went in for an updated CT-Scan to see what exactly her pancreas was doing. They found two cysts that had formed on the tail end of her pancreas. They are both spherical in shape with the larger of the two being just under 5 cm in diameter and the smaller being half that size. It wasn't all that unexpected considering the severe pancreatitis that she battled. At this point, we were just to watch the cysts to see what they did. Also, we learned that the whole "30% left" wasn't very accurate. Her organs in the abdomen were so messed up from the pancreatitis the scan couldn't give the doctors a clear enough picture to know exactly how much was or wasn't left. It seemed that enough was left to be functioning just fine.  All they could see is what appeared to be the head of the pancreas(which you need) and then a large empty space followed by a jumbled mess and cysts where the tail is supposed to be. Whether the tail is there is unknown. In Livi's case we are hoping that the tail is no longer there. If it is there, as enzymes are secreted from the tail, the cysts will grow larger. If the tail is gone, the cysts don't have any more dead tissue to fill with, and they will remain the same size.   Around this same time we were given the go ahead to relax Livi's diet restrictions and lessen her TPN to a mere 3 nights a week! This was great news! Better than anything we could have hoped for. With TPN only for 3 nights she would be able to be "needle free" for 4 days! That meant 4 days of taking baths instead of having to tape up and take a quick shower in fear of her needle/port site getting wet. 

By now we were self sufficient as far as her home health care was concerned. Back in August I had been given the go ahead to start accessing Olivia with her needle and had been doing so ever since (even at the doctor's office, she prefers me so the nurses hold her while I do it). We also had to draw blood for labs once a week which Livi enjoys helping with. The port is so nice to have, a real blessing of modern medicine. It is connected to a central line so we can take blood right from her line while she's accessed  During the day while she's not hooked up to her TPN, her line would simply hang by her side. (You could always see it hanging out of her shirt on the bottom, but it never bothered her. It was hard though,  around other kids who didn't know it was attached!)

We were very grateful as well for the diet restrictions being lifted. The GI said that he knew me well enough to trust that our diets were healthy; and he felt comfortable letting Livi eat whatever we ate!

So, that's what we've been doing since September. Livi has continued with treatment and finished her Delayed Intensification stage without a glitch. (DI is said to be the roughest phase of the treatment plan. It's 6 weeks long with 2 weeks of chemo 4 out of the 7 days of the week! She sailed right on through. None of us have any doubt that Livi was given a little leg up by all the TPN. She didn't lose weight, like a lot of the kids do in this phase and she never missed a treatment by low blood counts which is not as common as missing. She has stayed right on track! 

Through all the good, she has had a recurring issue of left shoulder/chest pain. She would be doing nothing of note and all of a sudden would grab at the left side of her chest and start gasping for air. My thoughts went immediately to heart attacks! We had her heart ultra sounded by a pediatric cardiologist and found nothing. He assured us it wasn't her heart, but the pain continued. Nobody could tell us what was going on. My sister had read in her nursing school books about differed pain of the pancreas can radiate to the left shoulder, but the doctors said it's in the back of the shoulder not the front. We were starting to feel very frustrated as to what the problem could be. Livi was being woken up in the middle of the night from this pain. Our minds were preparing us for the worst...had the cancer come back? Our fears would be laid to rest with a visit to her GI doctor in mid October.

The racquetball sized cyst and it's sneaky little partner had been pushing up into Olivia's stomach which in turn pushed up on her diaphragm which then triggered her frentic nerve to fire up into the front of her left shoulder! At least we finally had an answer as to why all the pain. Now came the bad news, surgery. If the cysts were causing this pain, they needed to be dealt with. Over the next few weeks I consulted with all the doctors I could as to what they thought the best approach to the situation would be. All of them were wanting the least invasive route for Olivia, but they also knew the issue needed to be dealt. They could not see a clear way around surgery. We were going to schedule it for an upcoming week that Bill could be home (pancreatic surgery is a week's recovery in the hospital). Bill was told that day that he'd be leaving on assignment for the planned week of surgery. We digressed and prayed that something would work out. The cysts were too large and causing problems. They weren't going to shrink on their own. The option of a surgery, connecting the cysts to the stomach to create a natural drain, was imminent. We were heartbroken. Our baby girl needed a break. I did not want to put her back in the hospital. 

Saturday, November 1st came. A young man in the deacon's quorum of our church called and said that their group of 12 and 13 year old young men would like to fast for Olivia on the following day, fast Sunday. "Is there anything specific that is coming up that we could fast for, for her?" was his inquiry. I started to cry. The consult for scheduling the surgery was that coming Wednesday. I told him of the surgery consult and expressed my concern of not wanting her to have to have this surgery. If they would like to join me in my fast for this purpose I would greatly appreciate it. 

Wednesday was the 5th and the day we had been waiting for. Olivia and I sat down with the surgeon who started laying everything out. After we had discussed all the options and why surgery was the best one I said, "In all honesty, she hasn't been having the pain lately. I don't know if you're a woman of faith, but..." I left it at that. She was surprised and said, "Well, if she's not having any of the pain, I don't see any reason right now to do this surgery. I'll get in touch with her GI doctor, tell him what I think, see about getting her off the TPN and letting this little girl eat whatever she wants. No restrictions." I could not believe what my ears were hearing. Nor will I ever forget it. To say that I was elated doesn't even begin to describe the joy and gratitude I felt that day. The next day our medical supplies were picked up from our home. We no longer had a medical supply room in our laundry room!

The next Sunday at church I was able to share this experience with the boys in the deacon's quorum. Mine were not the only eyes filled with tears at the realization of God's hand in this little girl's life. These boys had been able to participate in something miraculous. I knew that all would be okay, and that through our faith things would work out; I am so grateful that these young men were able to experience a portion of the miracles we have seen these last 6 months in our home. When I left their classroom, a counselor in the bishopric, and friend, pulled me aside and confessed. He said that when the young men had told him what they wanted to fast for he had doubt. He wondered if they could fast for something a bit...easier, peace and comfort, perhaps. When he learned of the outcome he was humbled.

I am "amazed at the love Jesus offers me".  That my pleas, along with those from the young men, and others who constantly keep my daughter in their prayers, fall upon such a merciful and loving heart. I marvel that God loves each of his children so very much and that if we but turn to Him in prayer our burdens will become light.

Olivia is doing great and loving the opportunities to have chicken nuggets or Taco Bell burritos if she has the urge. She is officially into maintenance, her last phase of chemotherapy and while it will last for 2 years, we can't believe we made it! 7 months and we're here, and still going strong!

Week with the Ellisons

It has come and gone. The week that we so had anticipated for so long. I think Nikki and I (my sister-in-law) have been talking about it since the beginning of September. Fortunately it was everything I had hoped for. Sam, Bill's brother, had a "training not a conference", as he would correct me daily, here in Vegas so they stayed with their two boys, Josh (2) and Cody (8 months) in the Red Rock Hotel and Casino for the week. While Sam attended his "training" Nikki, the kids and I played! We had such a great time...and learned how difficult life could be with 4 kids under 4! At times when Nikki went to grab something while we were out and about and left all the kids with me, or vice versa, we got more than a few stares. I suppose Aaron and Josh could be twins, they're only 6 months apart. We did the park thing, and a few casinos on "the strip" (Ceasar's and the Mirage's secret gardens), and of course, Red Rock Canyon. Unfortunately our love of the canyon didn't wear off on Josh. He was...let's just say we found where all the good echos are! I carried Cody on my back while Sam carried Josh in his arms so Nikki could get used to the whole heights thing. Once we hit the turn around point, Nikki took 

Cody and we all treked back to the car. Livi and Aaron did great and a little shout out to Aaron for not being carried back to the car! That's right...he did it all by himself! Bill, in true Bill fashion had to be needed elsewhere and flew out Thursday to New York, for the King of Saudi Arabia. I guess he's kinda important!?!?! The night before Bill left, Sam and Nikki treated us all to pizza which was a lot of fun to be out together and enjoy. (And about the picture to the left...yeah, I know what it looks like Aaron's doing, he is just looking at the gun.) 

I felt bad that we couldn't all spend more time together, Bill having to leave and all, but I was 

 more than thrilled with the time we did spend together.  I was elated to be able to watch all the kids one night to give Sam and Nikki a much needed date! 

And what would a visit to our home be without a visit to the 72 lane bowling alley! YES it is huge and fun. Josh had never before been bowling and wasn't quite sure what all the excitement was about but once he got goin' there was no turning back. He loved it and loved cheering his ball down the aisle. Sam even pulled out a turkey on his 10th frame! Cody was such a love the entire trip and was happy to just hang out where ever we happened to be.

We love you guys and can't wait until the next "training".

And Nikki...I need your pics!

Reaping the Benefits

The Saturday following Halloween, the Saturday before Nov. 4th elections, I had the privilege of attending Barack Obama's rally in Henderson, which is just Southeast of Las Vegas. I was given VIP treatment from...well anyone who knows me would know who got me the VIP treatment. It was so great! Thankfully our friends, the McMillan's were willing to watch the kids for me, so after the Trunk-or-Treat Friday night, I put them down at their house and then went home to prepare for an early morning. I had to leave at 6:30am to be there at the right time for my escort. When I arrived at 7 there was already a long line of cars waiting to get into parking for a shuttle. They were expecting upwards of around 18,000 people. I followed 

directions given to me on how to get in through the back entrance and was met by metro police as well as Secret Service. It's funny how normal they seem to me now. I told Bill later that I have never felt so scrutinized in all my life. I gave them my name and they "checked the list" and allowed me to pass. As I drove up the back road every security/medical personnel was staring at me. I felt very out of place but in another way, very deserving of being there. (I've sacrificed a lot for a chance at opportunities like this.) I parked the car and started walking toward the football field where the rally was to take place. I didn't call my "escort" in time and was stopped by two other special agents who proceeded to interrogate me. I was able to get a hold of my contact and was led inside the arena. I was able to sit down on the bleachers directly behind the podium with instructions to move to a small "roped" off area before the speech started so that I could be on the "front rope line". (I don't know why it's called "rope" when it's actually referred to as "bike

 rack", by those in the know, and looks much more like the latter.) It was really fun to be there hearing everyone talk about the candidate and the Secret Service that was swarming the area. One of the agents (a friend) was standing post inside the staged area and came over and spoke with me several times. My escort did not. He did however escort me to the restroom when I could no longer hold it. As could be expected there was ample amounts of enthusiasm and chants were going throughout the morning. I learned that some of the spectators had started arriving as early as 2am that morning! With toddlers! There was concern for the kids that were right up front because inevitably as the man of the hour does his hand shakes, the entire crowd presses forward and people can become badly smashed. I had been waiting 1 1/2 hrs and the event was to start in 1 more hour so I decided to take my place on the rope line so as not to be left without room. The VIP section was triangular in shape and allowed 8 or so people across the front with maybe 5 back at the deepest vertex. I'd say there were 15-20 people in the section. We were just off to the left, behind the stage, if you were to look head on.  The young man that led the pledge of allegiance was only in the 8th grade and when he came back down off the stage, said, "That was the coolest thing I've ever done!" He joined the VIP section. Senator Harry Reed spoke and upon leaving the stage, positioned himself just in front of me to my right, and signed and gave his speech to a little girl who had joined up with our group. When 

 President Elect Obama came out the crowd went wild. One side of the bleachers was completely filled as well as the entire football field of standing room only. I never cheered but neither did any of the others directly around me. Talk about a great view. It was very easy to forget that the rest of the crowd was there because Obama was so close to us. It was really funny too of 

where I happened to be standing. Because I was directly to the left of Senator Reed, every time Obama looked at him, it appeared as if he were looking at me. The kid that had given the pledge must have thought the same and actually believed it because at one point he exclaimed, "He did it! He just looked right at me! (I laughed at his enthusiasm.) After the speech, just as promised 

Obama came right to our section and I was able to shake his hand. I was wondering how fake it would be, would he be sticking his hands out and letting people paw at him? He actually took my hand and made eye contact with me and every other person whose hand he shook. I will admit, I was impressed.

Did the experience change my voting??? That's not important. What is important is that I can honestly say that this election year, for the first time, I actually did my homework on the candidates and voted for who I thought would do the best for our country all around, not for who my party was backing. Beyond that, now we have our new President, whom I have shaken hands with (even if it was a lefty grip), and I pray that he will be the honest man that this country needs.

Oh yeah, the picture at the top; Bill found it on Obama's website, that's MY HEAD in the bottom left hand corner. And that's the "lefty grip" with my right hand! So at the very moment when that photo was taken, the future President of the United States was looking into the eyes of Rachel Ellison(or there about)! Finally some benefits to this crazy way of life!

Halloween Galore

We were the pirate family with the unexpected Firefighter!

Halloween started a week early in our home, fortunately I was caught up enough with the kids costumes to have them done Saturday morning.  We kicked off the holiday by going to a Halloween story telling that morning. It was cute and a fun way to spend a Saturday that Bill had to work. (Those darn elections!) That night was our wards Trunk-or-treat! To our great surprise Bill walked in the door with minutes to spare before departure time. It was a lot of fun and it was so thrilling to see Aaron in action. He loved running up ahead to the cars and saying, "kick-or-keak" and "happy hawaween"!

We were able to do a few art projects for the season. Bill was home and we carved pumpkins on Sunday. Too bad we live in Las Vegas and by the next night they had already started to cave. Olivia designed hers with daddy and I carved out Mickey Mouse for Aaron. Lately he's enjoyed pointing out the mouse wherever we see it. Neither of the kids particularly liked digging out the pumpkin guts but I was able to make pumpkin soup from the remains and YUM-O!

Being true to myself and to something I truly enjoy doing I had the kids help me with our holiday treat for the neighbors. We ventured into new territory this year and made Carmel/candied apples. I must say I was very impressed with how they turned out
and look forward to doing them next year. Olivia also iced 24 cupcakes on her own for the kids Halloween party the next day! Good Job Livi!

Cherubs is a once a week music appreciation class that the kids do at church. It's not church related, it's simply held there because it's available. This Thursday, being the day before Halloween, we had a party and all the kids got to come dressed in costume. Complete with "scary" spider and witch songs (in the picture below they're cackling like witches) and even a "cake walk" to top it off (hence the cupcakes that Livi iced)!

Thursday night was a Halloween Party for children with cancer put on by Candlelighters and sponsored by many. It was at a motel down behind the strip and was the party of the century. 

There were carnival games, pumpkin painting, horse rides, dinner, buckets of candy and

 trick-or-treating. It was supposed to be a family affair and we had all RSVP'd but Bill ended up needing to work and I knew I wouldn't be able to wrangle in Aaron for the evening so he stayed at a friends and Livi and I ventured out as pirates yet again. We met up with our friends, the Shiblaq's (Leila's family) and enjoyed the festivities with them. Livi made sure to get her fill of the 

 carnival games and even painted a pumpkin, which she made sure we didn't forget at the end of the night.Olivia loved riding the horse. As I took her up to the tall animal her little body tensed up immensely and she started shaking her head. I encouraged her onward and she nervously accepted. She LOVED IT! By the end of the lap around the make-shift arena she looked like a natural and didn't want to get off.  Perhaps she has a bit of her great-grandmother in her.

The trick-or-treating was simply amazing. I don't know the exact number of rooms they had available for the candy giving, but we walked through 3 full wings at the motel and 98% of the rooms(on both sides of the hall were decorated to the max even with the patrons in costume. This room was one of 

 the many that Livi really liked. She wasn't scared like I thought she'd be, she really enjoyed it and thought it was funny. When we started the halls we were given a pillow case to replace our candy holder and it's a good thing. I ended up carrying it 1/2 way through from not only the weight but the volume of candy that was in it. Each door gave a handful of candy except the doors that had kids passing it out, they gave a single piece (it was pretty funny)!

At the end of the evening there was a Dr. B. sighting. He appropriately walked in to the dinner tent talking on his cell phone and wearing a Superman costume. The girls were so excited he was there. He was more than happy to share his time with them. (There were hundreds of kids there.) All in all it was a great evening that ended with Bill and I helping "sort" Olivia's candy only to dump it all in a bowl and hide it in the closet. I was bummed to not have our boys there but we'll go next year!

The week long festivities ended with a Trunk-or-treat with the McMillans at their ward building. Stepahnie did such a great job with her families' costumes. Even mom and dad dressed up in the Greek warrior "tunics". She said it took some convincing of Todd and her husband that they weren't dresses! It was fun to see the kids running everywhere that night. Livi stayed pretty close to me the entire evening but Aaron was his usual daring self and was doing just fine at the cars. He must have done well, he scored a regular sized 3 Musketeers bar!

Halloween was a great time this year. It was great that even though Livi's counts were down to O and she had actually received a transfusion earlier in the week she was feeling great. Now if we can just keep Aaron from finding all the candy!