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.

Getting Stronger All the Time, "Check me out"

Avarie is continuing to do really well. Her biopsy results for the graft vs. host came back today as negative. That is great news, we finally figured out what is causing all her tummy pain and diarrhea, it is our infamous battle with C-Dif. GRRRR! I started suspecting that last Thursday night, her poo started to look a certain look that I have become familiar with, so I took a sample in on Friday and results came back today, Positive! So back on Flagyl we go.
Avarie is continuing to get really strong, she is walking holding on to almost anything, she definitely still needs a lot of physical therapy help her strengthen her legs and learn to rewalk correctly. I'm going to discuss it with the Dr's tomorrow. I would really like her to be back in Physical Therapy Rehab over at Emanuel, but right now she is just not allowed to be around people and we have to be so careful with germs, so thats just not the best option for her at the moment. But don't worry Emanuel, we'll be back soon. She is doing so great, she can't wait to come and see all her friends there.
I've attached a little video of her cruising around, and of course there is one of Avarie's famous melt downs at the end of the video. She has been so sweet the last several months, with only meltdowns when there is high anxiety for her. The last several days have been almost constant meltdowns. This is the longest she has lived at home since the end of September and I think having to deal with the whole family dynamic and not be the center of everyones attention is wearing on her a little and having to share and deal with annoying little brothers that want to try to ride her like a horse doesn't help. She's just too darn cute crawling around on the floor, he just can't help himself he wants to ride her. At least he's not smacking and throwing things at her anymore, or well at least not as much.
So we are just hanging out and being bored together. It is nice to all be together, but oh my I can't wait for school to start again and get these kids out of the house and on a normal routine again. That word normal makes me laugh, but I know its still possible.

We have received preliminary results on Avarie's Transplant. They have so far tested 20 cells and all 20 cells came back XY Chromosomes, those are male cells. So Avarie's blood is male, that means that the transplant was a SUCCESS.
I have honestly been preparing myself and telling everyone that I don't think it worked. I have been preparing myself for it to be a failure so that I wasn't devastated when or if word came that it was her marrow in her. So far it looks like a complete success and we are exstatic.
I have realized that a lot of people don't understand exactly what have male blood means, or how the transplant works exactly, so just incase you are one of those I will explain it. We gave Avarie very strong chemo's that killed her bone marrow. Your bone marrow is located inside of your bones and it is what makes all of your blood cells. You have many, many types of blood cells, but the main ones are your red blood cells, which carry oxygen to your body, your white blood cells which are your immune fighters and your platelets which are your blood clotters. We killed the marrow which is the manufacture of those things. We then gave her stem cells from a new person. Stem cells are the building blocks of everything. When we put them into her and her marrow was completely gone, the new stem cells traveled to where her bone marrow was suppose to be and started growing there. Why or how they get there is a mystery to me, but somehow they know exactly where to go and what to do. It took them a while to regrow, but they did grow. The donor cells are now her new bone marrow. They are her new blood manufacturer in her body. So finding male blood in her means that she has a male manufacturer in her. She will always have this marrow, someone asked me that. She will always have male blood. There needs to be a CSI or Law in Order show made after something like that. It would be a really good twist for one of those shows.
We don't have the official results, but the chances that they took 20 cells and all came back male is a really good sign.
Avarie is starting to have some problems. She is losing weight and not tolerating food. She has been having diarrhea and a lot of tummy aches and then today has started throwing up. We took her in and they are scheduling her for a GI (gastro intestinal) test. They are going to take a scope down through her mouth and up through her bottom to look to see if she is having Graft vs. Host in her gut.
She seems to have gotten worse tonight. She got sick tonight again and has been asleep every since. I'm not sure if we'll be able to get her to keep anything down tonight. She has kept nothing down today, but they gave her a little hydration today at the Dr's office so I know she's ok for the moment, but I'm worried about how she'll do through the night tonight. If we can't get her to keep anything down tonight we'll be calling the Dr's in the morning and possibly take her in tomorrow to be admitted until we get this all figured out. The solution to having graft vs host, is to put her on steroids. I can't even begin to tell you how happy that makes me. No one is a nice person on steroids, but a 4 year old, its never a pretty situation.
I tried to upload a video her with this post of Avarie today. We had the nurse give her some ativan at the appointment because she had to have a dressing change on her PIC line in her arm today. It is always very traumatic for her, so we give her some ativan to help calm her down and ease her anxieties. I think she had a little too much though. She was halucinating for hours after. It is so funny. She was playing with this blue plastic throw up bag for hours. She kept seeing things in there and trying to get them out. We took the funniest little video, which honestly is kind of sad too, of her trying to save the gorilla in the throw up bag. Unfortunately, according to her he melted before she got him out. Its funny to watch her, but sad to see your child like that too. But we definitely had a good laugh today.

Surviving day to day

I may only post once a week for awhile, or when something big happens. Life is just a little crazy right now and honestly I'm just really tired, I am finding it hard to find the time and modivation to sit down and do much of anything but survive right now. Especially with this heat, at least our air conditioning is working. I am so grateful for that. I just wish it was working in the car, the car rides are horrible with this heat, but it is just way too expensive to fix. We don't get heat like this often, so if we just wait a little bit the heat will end and we'll be ok. Our windshield wipers and heat work and those are more necessities here in Oregon then air conditioning.
Avarie had her bone marrow biopsy today. It went well. We should get some preliminary results later this week, but for the full break down on which marrow cells are in her it will be next week some time. She has started having a lot more tummy pain, especially at night. The Dr seems to think that it may be graft vs host starting. They think she may just be delayed, which is uncommon but not unheard of. Avarie always gets the uncommon thing. At least it has renewed my hope that the transplant worked. I have been mentally preparing myself for the fact that it may not have worked and it may be her marrow inside, but with this latest tummy issue I am starting to feel hopeful. I hate that it makes me happy that she is having discomfort. I'm just so ready for this all to be over and be able to move on with our life. I just hate to think that the transplant didn't work and that we would have to go through all this again. But I'm not going there, I am determined to remain hopeful. Its been hard this last couple of weeks. Its been a long couple of weeks for us. She is doing great, its just life seems hard right now and yet everything seems stuck dealing with cancer so I can't go and fix anything in life. I hate that feeling. I am a fixer and well as many of you who know me I'm kind of a, just a little bit of a controller. I hate having so much going on in my life and be unable to control any of it or do anything to fix it.
I will update when I have some info, but please know that Avarie is doing great, it is amazing to see her doing so well after such a hard path that she took early on. I'm just ready to be able to say all my kids are healthy and be able to start making plans for the future and stop just living day to day.
Sorry if this post was kind of down sounding, its just kind of where I'm at right now. I'll shake out of it soon.
Hope you enjoy the pictures. They were from Sawyer's Birthday. He turned 2 on Monday the 27th. Avarie helped make his cupcakes and his blue frosting. She ate so much blue frosting that her diapers where odd colored the next day.

First Week Home!!!

Sorry we haven't updated at all this week. It has been a long and busy week home. Its always stressful trying to readjust to be home together. I wish I could say it was going smoother, but oh well, we'll survive it I'm sure.
Avarie has been having a great time. This week has been filled with riding our bikes in the evening so that she doesn't get too much sun exposure. Any little bit of sunburn could cause Graft vs. Host to act up. We went out back into our kiddy pool the one day with her lathered up in SPF 50 and she still looked pink to me after only 30 minutes. She didn't burn, but the meds she's on make her more suseptible to the sun. So we try not to take her out during the middle of the day when the sun is hottest. She had a lot of fun in that pool though. She can't actually get in it, but we put a little chair in the pool and let her play that way, it was fun until the baby picked up the hose and got her. She was done after that. The kids have also been building forts. The other day they built a fort that took up the entire front room. They even built a kitchen and took food out of my cupboards for their kitchen. That fort took a long time to clean up, but they had fun in it for almost a whole afternoon. Totally worth the clean up!
We even took Avarie to her cousin Lucy's party for a little bit. She wore a mask and it was outside and we were extremely cautious, but she was in heaven being able to be out of the house and be part of an event. She was in such a good mood about it she did the most amazing thing. She wanted to walk, so I helped her out of her wheel chair and started helping her walk. I realized that she was pretty stable on her feet, so I gradually let go and she took almost two whole steps with out any assistance. She then stood in the middle of the backyard for over a minute with out anyone touching her. She was so proud of herself and we were all so excited. It has been almost a year since she has walked or stood on her own. It was amazing. It helped build her confidence for trying it more, unfortunately we came home from the party and did another late evening bike ride. She wasn't looking where she was going and crashed into me as I was walking along side her. She hurt her ankle and has refused to use it since then, that was two nights ago. Hopefully it will feel better in a day or so and we can then start pushing for her to do it more.
Avarie's next big thing is happening this next Wednesday when she goes in for a bone marrow biopsy. It will determine which bone marrow she has, hers or the donors. She has had hardly any Graft vs. Host which we would have expected her to have more of considering it was an unrelated donor. So we're not sure what we'll find when we go in. We're hoping for the best and that she just got really lucky and has just done really well with the transplant, but its possible we may get in there and find out that its her marrow and the transplant didn't work and her marrow grew back. We haven't discussed the options if that is the case, we'll wait and see if we have to.