Almost 2 years Post Transplant! WOW!!!

It's been almost 2 years since we checked in to Doernbecher for Avarie's transplant. She actually had her bone marrow transplant on June 26th 2009. I can't believe its been so long. In some ways it feels like it never actually happened. But other days it still feels very real.
I am soooo happy to report that Avarie is doing AMAZING!!! She had her check up today and her counts were perfect! She continues to grow and learn. She has absolutely no lingering effects, except for a few attitude issues. But its hard to know if thats from her experience or the fact that she is an emotional, in charge 6 1/2 year old. Probably a little bit of both.
The rest of the family is doing great. Life in our new household is wonderful. Yes there are a few issues with kids adjusting, but we're working through those. Nothing a little time and love can't fix :) I hope....
Life is good...I am still in school full time. I've changed focus and I am no longer going towards nursing. I have decided on Dental hygiene. Its a better fit for my family life and schooling is shorter.
So I know this is a really quick update, and not a ton of detail but I just wanted to let anyone who still logs on to know that we are doing great. Life has NEVER been better...I am so grateful to my father in heaven for the blessings that have been poured upon me. My healthy and happy children and my AMAZING HUSBAND who I am so completely in love with. We're still newly weds so its ok if I'm a little gushy and honestly he really is just that amazing that he deserves the praise :)

WOW I'm Blogging Again!!!!

Its been a long time. For those of you close to me you know what this last year has been. For others I will try to give you a quick recap :)
After the kids and I moved back to Battle Ground, Craig and I did divorce. It wasn't an ugly thing, we are both still on good terms and continue to try to raise our kids the best we can. I started back to school and am currently taking my pre req's to get into the nursing program. Thats going well, stressful somedays, but its working.
Avarie is doing AMAZING!!!! She has completely recovered and even runs and walks like a normal child. You would never even know she had been sick by looking at her. She is 15 months post transplant and is just a miracle. She has started kindergarten this year and is also playing soccer. Now if we could just get her to actually touch the ball that would be great. She loves to run with the ball, but for some reason doesn't like to actually touch it. I think we'll bribe her this weekend and see if we can get her to actually touch the ball.
Some of our biggest news, which you may be able to tell by the header picture here on the blog is that I remarried. His name is James Rhyasen and he is amazing!!! We were married on August 7, 2010 and are blissfully happy. James has 2 children, Dallen 13 and Aubrey 10. We are working at blending the kids. Somedays are better then others, but overall it is going really well. We all still live in Battle Ground. I love it here.
We are super busy with 5 of the 6 kids in soccer and school. Its a crazy life, but I have never been happier and the children have never been better. They are all stable and happy and adjusting well. I feel so blessed to be where I am in life. The lord has definitely blessed us.

I'm going to start trying to Blog Again :)

Here are some pictures of the last couple of months. Avarie trick or treating as a clown with all of her Giles Cousins and a couple of recent pics showing off all her wonderful hair. Well honestly its not the prettiest hair in the world right now, its a little baby fine and wispy, but its hair and its there and that makes us all happy. The other pictures of Avarie and Sawyer in pots and pans was Addisen's idea. Addisen is home with strep throat and so she decided to cook up the kids, they were having a blast doing it.
Avarie has been doing great. She has had all her tubes removed and is completely off all meds except her anti-viral medicine that she will stay on for a year to help her fight viruses. She is continuing to get stronger all the time. She attends physical therapy once a week and Dr appointments only once a month. Wow, never thought we would get here. She has a bone marrow biopsy this next month at Doernbecher. She will have them periodically during the next year to check for relapse and she will have blood work done every month to check the same for a while and then she will go to every couple of months for the next couple of years and then once a year for the rest of her life. But the rest of her life is looking good now :)
Life has been going through some major changes for us at home. Craig and I have decided to separate and so the kids and I have moved back to Battle Ground Washington. I am living at my brother Brandon's. He has a 1300 sq ft apartment above his garage and the kids and I have moved in there. The kids are having a blast. Brandon built a tree house for his kids last year with a zip line that comes out of it. They have a trampoline, chickens, 5 acres, and a peacock that wanders their property for some reason. The kids have 6 cousins to play with every day and they have enjoying every moment until I say time for bed. I am doing good with all of it. Life has been so chaotic for so long, and most of you reading this understand the full extent of that chaos. This is a good time for me to try to get the kids life stable and help them heal and it gives Craig and I each time to heal too. Most of you understand what all led to this and some of you may not. For those that don't, I don't plan on discussing it on here. Just know that this is a good decision for everyone right now and we are all doing really well. I am sometimes way too open and I am trying to protect my kids so I don't plan on airing too much on here but I am usually pretty open for talking. Craig and I are on really good terms. We both love each other very much and are just trying to do what is right for our family right now.
As a family we all leave on Friday for Avarie's Make a Wish. We are going to Disneyland. The kids have no idea that they're going and Craig and I are so excited. Make a Wish is an amazing foundation. I am so impressed with them already and we haven't even gone. The things that they have set up for us are just amazing. I will post pictures this next week once we are back and tell you all about our trip.

1 Year Anniversary!!!

Thats right its been 1 year ago today that we started our FIGHT!!! And FIGHT we DID :)
We almost lost Avarie so many times over this last year, but she survived it and beat it. Thats right CANCER WE BEAT YOU!!! My baby is laughing and walking again and you didn't get her. She is an amazing and strong little girl and she didn't let you beat her. Avarie is a survivor. She survived and now she is well on her way to a full recovery. She still has a long way to go to be fully recovered, but she amazes us every day with all she is getting back. She now walks almost exclusively and has started potty training again. She can almost wear a clip, her hair is coming in so thick and dark. She is doing really GREAT!
Here is a little video to show everyone how well she is doing.
I'm sorry I don't post more often. Emotionally I am just ready to move on with life. I don't want to keep living cancer. Cancer is so draining. I will keep updating as often as I can, but it may be only every week or two. I am just ready to try to live life and try to feel normal. Life almost feels normal again and it feels so good to feel normal.

Happy Birthday My Courageous Little HERO!!!!

Avarie's birthday is tomorrow or today depending on when you read this. She came into this world on September 14, 2004. It was my least fun delivery! It was all natural and way too fast. The Midwife barely walked in the room as she was crowning. We were scheduled to be induced the following morning, she was the only one of my kids to go past their due dates, so I had never been that pregnant and I was not enjoying it. She must have known I was going to make her come into this world, so in typical Avarie style she decided "fine, if your going to make me, I'll do it myself" and then she came with a vengeance. I started contractions about 11:45 pm and she was born at 1:23 am. It is not fun to fully dilate that fast, lets just leave it at that. She was a wonderful baby. I was so much more relaxed as a mom because she was my 3rd, I just remember sitting and loving her soooo much. I can't say she was the best toddler though. I barely made it through those years with her. From as early as she could, she asserted her independence. No one was going to make that child do anything she didn't want to do. She was my most stubborn and strong willed child and even after having number 4 who is currently going through a VERY trying toddler stage right now, I still look back and know that Avarie was my most difficult toddler. She was just so strong willed.
Last year we celebrated her birthday with her limping from what we thought was Juvenile Rheumatoid Arthritis. Her ankles were very soar. About 2 weeks later we were checked into the hospital trying to find out what was wrong, because JRA diagnosis just wasn't fitting any more. She was in too much pain and her spleen was enlarged. This whole last year has been a journey and a battle that I desperately want to put past us, but yet desperately want to cling too. Its a strange feeling. When we were going through this last year I was really OK most of the time. I was too busy learning and fighting this horrible disease to feel it. Now as life is starting to settle down, I find myself more reflective and much more emotional about everything. I have a feeling I'm going to get even more emotional about it all as time goes on, but I guess that's part of the healing process.
This Birthday as Avarie prepares to turn 5, she is walking again! She is currently walking about 25-50% of the time. It is Amazing to watch! She is Amazing!
There were times this last year that I honestly didn't think we would make it to her 5Th birthday. Now here we are and things are going great for her.
Avarie still has that strong spirit, although to be honest a lot of it has been tamed. She can still throw a pretty good fit, but there is something about her strength that has been broken. It makes me sad to see that, but to be honest there is a part of me happy to have that tamed just a little. This last year has definitely made her grow up a lot faster then a normal 4 year old. People are always so surprised to find out she is only 4! I think its because of all she has been through, it has made her seem older.
Some of you may remember months ago about Avarie being chosen to be a Community Hero for the Children's Cancer Association. Today was the unveiling of the Wall of Courage that has Avarie and 19 other kids on it. It has a huge picture of her and her story next to her picture for everyone to see. The wall will travel around OR and WA to help promote Cancer Awareness. I am so proud of her!
She had a great time at the event. It was pirate themed and there were pirates singing and playing music. Avarie danced and played and saw some good friends from Emanuel that we hadn't seen in a while. One of the other little boys that was chosen for the Wall, Caden, was also there. He is 1 and has had a very rare and aggressive form of brain cancer. He was there and doing GREAT!! It was so good to see these sweet little kids that have gone through so much, out playing and having fun and HEALTHY!
Their was also face painting, not just normal face painting, awesome spray painting. The kids had fun, but Avarie didn't like the feel of them spraying that on her face, so they just gave her a small butterfly on her arm. Of course Craig got in on the action and had them paint him a Devil! I know he is so odd!
Avarie's chemo pal, Maggie was also there. She came to support Avarie. She has been such a great chemo pal for Avarie. We've only had her for a few months, but she has been awesome! She is a volunteer for Children's Cancer Association. Her job is to just come and play with Avarie and try to make her Dr appointments and hospital stays a little better. She definitely does that! We are really happy to have her.
At the end of the day all of the community hero kids and their families gathered on the street and each child got to release a dove. It was way too packed on the street and we didn't actually get to see Avarie release her first dove, but Addisen helped her. I was a little upset at missing it, because it was such a great way to let go of this last year and move forward, clean and hopefully carefree. Luckily, they actually had a lot of doves to release, so Avarie, Craig and I got to release another one together. That was my favorite moment of the day.
My birthday wish for Avarie this year is to just be a happy, carefree 5 year old. I just want her to play and enjoy life. She has missed out on too much happiness already. This year is going to be a much better year for her and all of us. Happy Birthday My Little Hero!

Things are going GREAT!!!!!!!

August is almost over and I have not been updating. Life has just been so busy and so crazy. Not much has happened, Avarie is continuing to do great! She is getting stronger and they started weening her off of her immune suppressing drugs this week. It will be still several months until she is completely off of them, but this is a good start. She hasn't been having any problems, which is amazing. Things have gone better then any of us could have hoped for.
Avarie has begun to walk a little unassisted. Well it was only a little, until today. She had her first outpatient Physical Therapy appointment today and she was so excited about it that she went there walking up and down the hallways showing off and then when she got into the therapy room and saw a play structure and swings and mats everywhere, she went crazy and spent almost 45 minutes at an almost run going on everything. She was upset when it was time to go and was refusing to get off of the play structure. By play structure I mean an actual wooden play structure that the therapist had to climb up after her to help coach her down. And anyone who knows Avarie knows that there is no negotiating or distracting her. That child is going to do whatever she wants to do and when she wants to do it. If you don't give in to her demands then you deal with the tantrum and the glare! So we had both because mommy just doesn't do the give in thing. It was amazing to watch her be a little girl today. She had so much fun. They actually don't plan on doing physical therapy with her after her evaluation today. They think she just needs some time and she will do fine on her own. I am not enthusiastic about that evaluation, I would like her to have a safe place to go to and have them help her work on her walking technique. She walks with her legs about a foot apart and very straight legged. They said with budget cuts that they just don't have the room to do too much with her. I plan on asking for a second opinion from Emanuel. I miss them all anyway, so this will be a good excuse to get us over there.
Life at home has been difficult, but is getting better. Its amazing how much this last year has impacted our family. Its been in ways that I didn't even realize until we were all living back under one roof again. Its getting better, life is starting to stabilize. I love that word Stabilize, its a nice place to be. Now if we can just stay there.
Craig found a job today. He has been out of work since February. He is so excited to go back to work. He loves his children, but he just does not have the patience to deal with the whining all day long.
The kids are excited to start school. Mommy is REALLLLLLLY excited for them to start school. I am also going to be starting school, just one class for right now. I'm scared to do it, I'm not sure how I am going to fit it in, but I have wanted to go back to school for awhile now and its time to start. I guess I will have to reschedule my nervous breakdown. There's just too much to do right now and in the near future to do that. In case your confused on that, I have joked, but been a little serious too that when this whole ordeal was over I was going to have a nervous breakdown. I have had it planned, it was suppose to start on Avarie's day 100 of post transplant follow up care. That is when she is suppose to be out of the woods and be better, we are at almost day 70. There is just no way that I can allow myself my little break down in 30 days from now, darn I'll have to plan for next year sometime. Maybe I'll have money for Hawaii by then. I've never been and when I get really stressed out that is where I mentally go. I picture myself on a warm beach, it helps me relax. Its where if I had my choice I would have my breakdown. Most likely it will be me in my room telling everyone to let me sleep in 10 more minutes. I guess that will have to do for now.
One last note, I will probably blog about this again and again, but please with school starting back if your children are sick at all, please do not send them to school! Avarie has had all of her vaccines since birth completely wiped out and does not have a functioning immune system. The little bit of immune system she has we are suppressing with drugs to keep it from attacking her body. Any sickness that she gets could be life threatening. So with this swine flu and extra bad regular flu season they are expecting, I am paranoid. She will be vaccinated for both, but the swine flu vaccine will not be ready until mid October, so we have until then to worry. So please if your child is sick AT ALL do not send them to school or take them to church. We have another little girl in our ward that also has Leukemia. She is still undergoing chemo, so she has a compromised immune system too. Please do not go to church with any kind of cough and please be fever free for 48 hours before going. The simple act of staying at home when your sick could save our children's lives. They have undergone sooooo much this last year and I am hoping that people will be extra cautious with such a scary virus going around this year. Avarie and Grace have survived too much to have to try to survive Swine Flu too. OK that was my vent and I'm sorry but I will probably do it again. I am just soooooooooooo scared and a little paranoid about this darn flu.
Oh, one last note. I won't have any new pictures or videos for awhile unless someone else takes them. My sweet little boy tried to take a picture and dropped my camera and broke it. I will try to get my sister in law to take some pics every once in awhile so that everyone can see how well she is doing, rather than just hear about it.