Trick or Treat Hospital Style

Happy Halloween! Avarie dressed up as Ariel. The hospital gave her a halloween costume. She had planned on being a princess back home, but we hadn't brought the costume here yet. So last night the hospital came around with two carts full of brand new halloween costumes and let the kids all pick any one they wanted to keep and wear for the parade today. The entire 3rd floor is the childrens floor so they turned it into the parade grounds. They handed out toys and fun things instead of candy. The hospital does so much for the kids here, trying to keep them happy and active. I am so impressed with the things they do to try to help the kids on an emotional level and not just treat the illness. Avarie of course is not responding well to all the fun things yet, but I am hopeful that she will.
The psychiatrist came in and talked to me for a while. He is very concerned about her. He feels she is definitely depressed. He said he would rather see her mad and angry then how she is acting. He took her feeding tube as an example; she has not once asked about it, touched it, tried to pull it out or ask me to take it out. She completely ignores it. He would rather see her angry about it and yell about it, even try to get it out. Its not uncommon for kids her age to pull them out. She does none of that though. She just ignores it. That has him troubled. He says he is going to keep a close eye on her while she is here and have Child Life start coming in a lot more. Child Life is the organization here that comes in and plays with the kids and tries to get them to intereact with others. There main job is to try to make the kids happy. I think they have the best job in the hospital. He did tell me that the Nuerologist, who came in again today to do a second evaluation, feel very strongly that there is something more going on then Depression. They all feel very strongly that she needs the electrical impulse shock treatment to see how her nerves and muscles react. I have heard again today how not fun this is test is. The oncologist mentioned there is a drug that can make you not remember and she is going to look into seeing if Avarie can have that before the test. They are planning to do the test some time early this next week. We will definitely still be here until at least Tuesday at this point. They are also going to be doing physical therapy with her everyday. The therapist said they want to take it slow with her and just try to get her to play with them, but that they think they are going to have to teach her to crawl and walk again. But for now they just want to work on sitting and playing.
Its hard not to feel overwhelmed by all of this. I am feeling like my baby is falling apart. It feels like she has just given up and we need her to fight. She has to fight for her life to survive this. I think we all know what happens to people who give up when they have cancer. I won't let that happen to her. I am just so grateful that all of the Dr's are taking this so seriously.
On a more positive note, I am so overwhelmed with emotion for all that my family and friends are doing for us right now. Especially my mom and sisters and sister-n-laws. They have been working so hard to put together this garage/rummage sale. They have been at the grange every night this week until midnight setting up and pricing things. I know they are all feeling overwhelmed and tired. Honestly as much as we need the financial help, I am more concerned with the sale being a success because of all the hard work they have done. I want them to feel a sense of accomplishment to have put together something so big in such a short amount of time. They are amazing people. Honestly I am surrounded by amazing people. This whole experience has made me see my entire life so differently. There are people that I have known my whole life and then there are people that I have only known a short time all chipping in to help make our life a little less stressful, there are even people that I don't know and have never met that have offered help. My whole family is so overwhelmed with the outpouring of love and help. I have actually received 3 phone calls at the hospital from different family members who all called me very emotional about the amount of support and love they have seen. My husband and I are so grateful to everyone. It is so hard to put in to words what it all means to us. This has been a very hard time for us emotionally, physically and financially and yet we have so many people stepping in to try to ease all that they can from us. Thank you all so much. It eases our burdens so much and allows us to focus on our children and trying to get and keep them all healthy and happy.

Avarie back in the hospital!



AVARIE'S BIG HAIRCUT DAY




Daddy and big brother Carter

Back in the Hospital

We came yesterday for just her typical chemo appointment. That is unfortunately not what we ended up doing. I have been telling them about her lack of activity every time we come in, but since this last weekend it has just gotten worse. She has not been walking really this whole time. I could push her to walk back and forth to the bathroom about half of the time, but since her bone marrow biopsy this last week she stopped even being able to do that. She could still stand while I tried to help her get dressed after going to the potty, but over the last several days even that has stopped too. Her legs have become like noodles, when I would try to maker her stand her legs would slide out from under her. When I try to pick her up she is like a newborn baby that has no ability to hold herself up, and she weighs 35 pounds which is not fun to carry around and pick up with no help from her. It makes her slippery. When we came in to her appointment yesterday they finally really listened to me and found it really odd. They said that it was not normal. I just thought the muscle weakness was due to her chemotherapy, they said a little could be, but not this. They said that when I would say something about her not walking before they just thought that it was her extremely strong and fiesty personallity trying to have control over something. Then yesterday they really listened and did a reflex test on her, where they hit the joints looking at the reflexes. Her lower body had very little reaction, while her upper body seemed ok. They finally took my concerns seriosly, they too are now concerned. In addition to all of that, she had not been going to the bathroom which is a very big issue in a cancer child. I hope people aren't going to mind bathroom talk, because there is going to be a little. If she gets constipated she is at risk for getting a slight tear in her bottom. If that happens she is at high risk for a bacterial infection which her body could not fight, this is a major problem for cancer patients. She is also not eating as much as they feel she should. The steroid should make her ravenous, but instead she eats pretty normal amounts, she definitely has what I call pregnancy cravings, where she wants what she wants and she wants it now, but she doesn't eat to the point of throwing up which is totally normal in kids taking steroids.
So she is here for a lot of reasons.
Last night they put a feeding tube down her nose. They gave her a sedative to help with it going down. It was still not pleasant. She gagged and tried to throw up for almost an hour and then finally just fell asleep.
This morning she had an MRI. They put her under for it. The results came back just a few minutes ago, it was all clear. We also met with a nuerologist this afternoon. She said she did see a lot of muscle weakness in her lower half, and only a little in the upper part of her body. They are scheduling an electric impulse test on her muscles. They will hook her up to some electrical things and then shock the muscles and see how they react. They have prepared me that this is not pleasant. I want to say no, I don't want you to do that to her. I just can't imagine putting her through more, but I know that they need to figure out what is going on.
She also had her first physical therapy appointment today. She was not happy about it. They had her on a swing, which I actually thought she would love because Avarie loves to swing. She has always loved to swing, she would stay on a swing all day if she could. I remember deciding not to buy a swing set simply because I knew I would get no rest, she would just whine and cry to swing all day if she unlimitated access. But she did not like it today. The therapist did get her to warm up a little towards the end, and by warm up I mean they had her communicating with them a little better. She even made a halloween picture out of stickers which I think she kind of enjoyed a little. Although she wouldn't smile.
They have also called in to have a consult with the psych department. One other possibility could be that she is Depressed. They said it could be possible that the one chemo drug she gets called Vincristine does cause some muscle weakness and that along with the fact that she did not walk due to bone pain in the beginning and then has definitely become depressed could be causing her to just lay there and let herself waste away. I kind of think this is more the case. I have watched her lay there and not react to anything or anyone. She won't play with her toys, or color or even talk to her best friend Charlie or her best cousins Brooklynn and Lucy. She just acts as if no one is in the room. She ignores everything. I know she is depressed but the question is could that really be causing all of this. The Dr's think there is something more going on then just that. We'll be here in the hopsital until they get some answers.
She will be trick or treating here tomorrow. I don't think she really cares though. I think she would just lay in her bed and not trick or treat at all, but I am going to dress her as a princess and put her in a wagon and take her around no matter what. She needs to get out and move and interreact with people.
I'll update again tomorrow. I have some pictures of her getting her hair cut off on Tuesday. I think I forgot to mention that earlier. We cut off her hair on Tuesday. She wasn't losing it in huge amounts, it was just lots of lose hairs starting to fall out and they were bugging her, getting in her mouth and face. We gave her the option and she said she was ready. So tuesday we made it a big family hair cut day and we shaved Daddy's head and our son Carter's head(he looks funny) and Avarie's. Addisen(big sister) and I also got hair cuts, but we just did shorter around our jaw line hair cuts. Avarie wanted me to shave my head she said it wasn't fair that I got a hair cut like Sissy's and she didn't, but I just could not bring myself to actually shave my head.
Since I am at the hospital and I am updating this on a laptop I can't post the pictures, so I am going to teach my husband how to post the pic's. There are also a couple of pictures of her here at the hospital. So the next post should just be some pictures, unless my husband wants to add something. Sometimes he surprises me and adds little things.

Yummy Meals, and Wonderful Friends and Family

I included in this blog pictures of Sawyer enjoying his spaghetti dinner. He loves spaghetti. I love anything that I don't have to cook. It always taste better if I didn't have to cook it.


I want to dedicate this blog entry to all of the people that have helped to make our life a little easier right now. It is hard to put in to words how much I love and appreciate all that you have done for us. We have had many meals brought in, all of them yummy and much appreciated. We have had our house scrubbed top to bottom. I have amazing family and have even made several friends that have sat and talked with me and let me get through some of the tough moments. We have had wonderful friends and family stop by gifts for Avarie, even wonderful homemade pictures from some of the children in the ward. They are all up on the fridge right now. We have family planning amazing events to try to help us through the financial aspect of this all and we have had extended family and friends from everywhere step up and contribute and help. Honestly I am amazed at how many people there are willing to help right now. It is times like this when you realize how many peoples lives you have touched and been a part of and them a part of ours. Many of our family and friends have helped with our children, they have all loved every moment they have spent with all of you. You must have kept them all very happy, because they are always wanting to know "Do we get to go anywhere today?" and Sawyer, the baby, will go to almost anyone over me right now, he still hasn't forgiven me for weening him 4 weeks ago. He sure can hold a grudge. Then tonight we had a family from our ward stop by and bring us the funnest Family Home Evening Lesson and activity. I don't think I have even thought about F.H.E. in over a month, that was so appreciated. Even more appreciated was the wonderful gift they gave to our family. They know who they are and what it was, Thank You! I didn't realize what the gift completely was until after they left, but it left me speechless. I also have this secret fairy(that's what I call her) every time I leave my house I come back and my fairy has been in my home, vacuuming or doing laundry, or turning my toilets blue(that's what my son calls it, its just toilet cleaner but he thinks its so funny). I love that Fairy, she has been a rock to me. I have so many rocks in my life, I am so grateful for them all.
So this post is to all of you, your love is felt and so appreciated. I have always had a hard time accepting help, I am definitely learning a very valuable lesson right now and that is to accept the help and love from those around me. I have just always had an issue with not wanting to be a burden to anyone, or to inconvenience them, I realize now that I am a burden to myself when I don't let others help. Thank You all for helping me carry this load. It is definitely heavier then I had thought it would be, and I am so grateful that you all had the foresight to know that and to step in help before I became too bogged down.

Countdown to day 29! Only 10 days left!

Only 10 days left until day 29. I'm honestly a little nervous for day 29. What if they still find any leukemia in her bone marrow on that day. Then we will be looking at agressive intensive chemotherapy. We already know she is going to have more intensive chemotherapy as it is. I am just ready for this to start moving in a better direction. I know that some of the leukemia has been killed, but there is still so much left. And the longer it takes to get it under control the harder it is to treat.
Avarie started losing hair today. Its the first time so far. I had expected to have some fall out occasionally like when I washed her hair or brushed it, but up until today it had held strong. Today though I started noticing quite a bit of loose hairs on her and on her pillow. They say it will go fast now. I'm not quite sure what fast means, like in two days in one week I don't know. When we see it start to really fall out we will shave it. I don't want her to have to watch clumps of her hair fall out around her. She is not happy about the losing her hair thing, but we have just made it a normal part of our day to talk about so that hopefully she has gotten more use to the idea. She has even complained a couple of times about her hair getting in her face and I have told her how nice that will be when she doesn't have to worry about that any more. She even agreed to a haircut, just she said not a boy haircut.
I took Addisen and Carter to church today for their primary program. It was the cutest primary program, our ward did such a good job finding roles for all of the kids and showcasing some of the wonderful talent some of the kids have. It was hard to listen to the sunbeams sing "Jesus wants me for a Sunbeam". Avarie is suppose to be there with them, she will soon. It was harder to get through church then I thought it would be. Everything seemed to make me emotional. But I got through it. My mom stayed home with Avarie and Sawyer. Church is pointless with Sawyer, he just runs the halls. But it was definitely nice to get out and have that spirtual reminder that I am not alone. Thats important right now, I needed that today.

Finally a few answers

Avarie had her appointment today. I was expecting her red blood cell count to be really down because yesterday she did nothing but literally sleep all day and was extremely pale. But actually her counts looked okay, so no transfusions today.

We finally have the genetic testing results back and that is good news. Everything came back good, it is NOT t-cell. We are very happy about that and actually a few of the genetic markers that came back were actually really good. It's long and technical to explain it, so I'll just leave it at that it was good.
Unfortunately, not all the news today was good. They have the preliminary bone marrow results back, we are still waiting for the exact number, but the preliminary results show that she still has between 10-20% of leukemia cells in her marrow. The Dr.'s were hoping for 0 or close to it the first week and where definitely hoping for 0 this week. The fact that she hasn't responded as fast as they like means that she is now definitely classified as a "slow early responder". That means that they will have to intensify her chemo. We don't know how much yet, she still has to finish the 29 day treatment course that she is on, but at the end she will not be in the low category that we had hoped for. She could possibly go into the average category if she starts responding better, but most likely she will be in the high category. I honestly don't know a lot about this category and what that completely means. I didn't really pay that much attention to the high category because it just seemed so unlikely that she would end up there. The Dr's were quite confident that she had the best form of leukemia to treat and that her blood counts at diagnosis were so good they thought she would be an easier case of leukemia to treat. Now they didn't say this to me directly, I just picked up on this from comments and information they have given to me over the weeks. This does unfortunately decrease her survival odds, but they have assured me only slightly and that is why they will be increasing her chemo to try to make up for the decreased odds.
She is also being given a referral to a physical therapist. I don't know if I have really mentioned this in past blogs or not. Avarie does not walk or sit at all right now. It has been 3 weeks since she has really walked. Last week I did have her walking a little to the bathroom and back to the couch, but it was completely supported by me. Her legs are like noodles. She has lost a lot of muscle tone due to the chemo, her immobility, and her weight loss. She continues to lose weight. We are now at almost 5 pounds she has lost. You can really tell when you look at her, especially with her shirt off. I have two main goals this week with her, to get her more exercise and to get more calories in her. I am going to start doing leg exercises and make her start walking to the bathroom more. The food thing, she is actually eating a fair amount of food right now, more then she ate before all of this, but her body is burning so many calories fighting this cancer that she needs more calories to make up the difference. Her blood counts reveal that she needs more protein, this has always been an issue with Avarie, she's not much of a meat lover, but we've got to get her to eat more protein. I am going to have to get creative. If she only liked ketchup it would make things so much easier, but unfortunately she can't stand ketchup.
These are those beautiful hats that were made for her. She was wearing the pink one for her Dr. appointment today. You can also tell how her face is starting to get puffy from the steroids. This will go away in case anyone was concerned about that, its just a temporary thing while she is on steroids.

Flyer for The Garage Sale

This is a flyer my sister-in-law made for the garage sale coming up on Nov.1. To see it full size you just click on the bottom corner of the flyer where it says "scrapblog" it will take you to it larger, when you get to the new site you can also click up towards the top it will say "view full screen". You'll be able to read it then. Its hard to read the words when it is condensed so small. You can also copy the flyer on that page and email or post it to any one or any where. Thanks for all your support, and thanks especially to everyone that commented on Avarie's blog. Craig and I really enjoy reading the posts and hearing from people that we have not heard from in a while. It is so comforting to feel remembered in this time, it really helps us not feel alone.

Day 15

Today was a Chemo Day. She also had another bone marrow biopsy done. We'll get those results on Friday. We would normally get the results on Monday, that is our normal check up day, but Avarie's counts are getting pretty low and they want to do a recheck on Friday instead of waiting until Monday. The chemo kills off your blood cells, and since she just got chemo today her numbers will continue to really drop this next week on top of them already being pretty low.
They also want to see her again on Friday because they have been noticing a trend in her blood work. For some reason, and they don't know why, her liver enzymes and bilirubin levels are rising every time they do her blood work. They are not so high as to warrant immediate action, but they are definitely high and have been getting higher each time they draw blood. They said that later in in chemo there are some meds that can make the liver angry and raise levels a little, but she hasn't had those drugs yet. So they're not sure what to make it yet. They think it will correct itself her pretty soon, but since they don't know what is causing it they can't say that for sure. So just more monitoring is required for now.
Avarie is definitely now into the numbers where infection is probable and we need to be very careful with her. Of course Halloween is only a little over a week away. I have some different ideas for her for trick or treating, like maybe we put her in a stroller and take her just up and down our street and I go to the house and knock for her and get the candy for her. That way she is not touching anyone or anything, but she still gets to be outside trick or treating. She does not feel well at all so I can't imagine that she will want to trick or treat for very long. She may not feel up to even doing that. Maybe her sister and brother will just have to try to get enough to share with her.
Yesterday Avarie got 4 of the cutest hats in the world. Someone from our church asked her sister in law to make them for her. Honestly I can not do them justice to describe them so I am going to post pictures of them. I can't post the pictures right now, so I'll add them on later, but trust me they are so so so so cute. Thank you Sister Hawkins. Avarie wore the blue one to her chemo appointment today.
The reason I can't put the pictures on right now is I have a group of, well there is no other way to say it, a of angels in my home right now cleaning my house and carpets. They broke in to my house while we were at chemo this morning and have been working hard ever since. Well technically they didn't break in, because our neighbor has a key and she orchestrated this whole thing. I am so touched by all of the care and help people have given to us. They do it simply because they care. That is an amazing feeling to feel cared for and loved. Thank You!
I have talked with many people who have been following and reading this blog and I am so grateful that people care enough about us to check up on us and follow our struggle. I wanted anyone and everyone that is reading this to know that if you want to you are all welcome to post a comment. You just click on the comment button at the end of this post and write anything you want. I can't remember if there are restrictions on who can post a comment or not, I'll have to check with my little brother, he knows all that stuff. But please feel free to write anything you want to us, I check the blog often and I love reading comments and questions. You can also ask any question you want and I will answer it on the blog. Honestly I am so open about all of this, if anyone wants to know anything please ask, I am not offended or shy about anything. Sometimes to a fault, but oh well I like being an open person. So please feel free to comment to us anytime.
Oh, one more thing. Next Saturday on November 1 my family is organizing a large garage sale/fundraiser. It is being held at a grange over by Costco. I will have to get an address, I just know its over there some where. If there is anyone that has anything they would like to donate my family is organizing trucks to come and pick it up, or if you are able to drop off that would be great also. They will start setting up on Halloween day, so people can drop off anytime that day or even on Saturday. If you don't have anything to donate that is fine, just come and check it out and see if there is anything you would like to buy. We have about 7 wards that we are hoping to get donations from so far and many friends and family. Please call me if you have anything that you would like to be picked up (360) 723-0787 or post it to my blog. We are trying to raise money to have a manufactured home moved on to my parents property. It will help us financially to reduce our bills each month, but it will also give our whole family a lot more security for the times when I have to be in the hospital with Avarie or at her many, many doctor appointments. The kids can then be in their own beds and come and go from school like normal and not have to plan every detail. Right now it is so difficult trying to figure out someone to watch the baby, and then get the kids off to school and be here when Carter gets out of Kindergarten only a couple hours later and then Addisen a couple of hours after that. We are having to figure that out at least twice a week and now maybe three days a week. If we go into the hospital at all then it would be every day. It is really hard to shift the kids around all the time from person to person. We are hoping to raise enough money to buy the manufactured home and have it moved so that we don't have to do that anymore. This is going to be a long struggle for our family and we are trying to figure out ways to make it easier on the kids and ourselves. So any help that anyone can offer would be great, like if anyone knows anyone that moves homes, that would be great to get a referral. Thanks.

Day 13

We had a follow up appointment today to get the results from last weeks bone marrow and spinal tap and also to recheck blood levels(we do that a lot). There is some good news and some not so good news. Good news is the spinal came back clean still, that is great I do not want her to have to go through radiation to her head, and so far that is looking good like we won't have to do that. Unfortunately the bone marrow results did not come back as good as we were hoping. When we started this her bone marrow had been taken over by 60% leukemia cells. For a great majority of kids when they start chemo the chemo will kill off most traceable leukemia cells in the first week, so when they go back for the second bone marrow the tests will come up almost clean. That doesn't mean that they are cured, it just means that they have the leukemia under control. They call those kids fast early responders.
Avarie's bone marrow did not come back clear. She is not a fast early responder. The chemo during the first week only killed off about 20% of the leukemia, her bone marrow is now at 40% leukemia cells. I asked them what that meant and they told me it means they want to recheck it again this week, on Wednesday when we go in for chemo. When they get the results this Wednesday it will give them a better indication. Most likely it will mean that they will have to increase how they are responding to her leukemia. She said it does not mean that they won't get all the leukemia they will just have to relook at her treatment.
I was trying to take that all in and then didn't ask any more questions, of course now that since I have left I have a million questions, like does this decrease her odds for remission? I am writing all these down so when I go back on Wednesday I can ask them.
Also I forgot to ask if the results were back in on the genetic tests on the leukemia, is it a t-cell or b-cell. I was talking to my sister and her research suggests that Avarie's leukemia is most likely a t-cell leukemia. We were and are still hoping it will turn out to be b-cell because it is easier to treat, but since she is already not responding to treatment as well as we had hoped it is most likely going to be a t-cell leukemia. The t-cells are the main immune cells that fight off infection. They are the cells that are attacked in HIV, that is why people die of HIV because their t-cells are destroyed and they can't fight off infection and so they actually die of some sort of infection and not the HIV itself. So we were hoping that this leukemia would not be t-cell.
So we go back in on Wednesday for her chemotherapy and another bone marrow biopsy. I will hopefully come away with a lot more answers then. I won't know the results of that biopsy until the following Monday, but I will be able to ask a lot more questions and get a better idea of what it all means then.
Her blood counts still looked good today. By good, I don't mean good like you or me, but good for her. She is low on everything, but now so low as to need a blood transfusion yet or to be hospitalized for fear of infection. They are low enough to worry about infection, but not too scary yet. That is good, they said her numbers will get lower and lower each week. The chemo just kills all blood cells, not just the leukemia ones, so the further we get into chemo the worse her numbers will get.

Day 11 - A Bad Day

Today was a bad day. Avarie has continued to become more and more lethargic and then tonight she threw up for the first time during all of this. I can't completely blame the throw up on chemo, she partly gagged too, but the chemo definitely was the reason her stomach was not feeling well in the first place and then she was taking some of her meds which do not taste good and she gagged on them, right in my face. Yes she threw up in my face, that does not make for a pleasant day. The day was hard for many, many other reasons also, but oh well those reasons are just life.
She continues to look thinner and thinner to me. Our neighbor even commented tonight when she was over visiting on how thin she is starting to look to her also.
Its strange, she has been sick now for quite a while, but it is only with in the last few days that it really feels like it. She was definitely in a lot of pain in the hospital, but that was more physical pain then sickness. The pain is getting better, but she is definitely getting sicker. The best way I can describe it to someone reading this is to say it feels like she is hollow. There is just something missing in her, its like shes there but shes not really there. That is the hardest thing to deal with right now. I can take the constant carrying her everywhere (even though my back hurts) and demands for this or that(major steroid issues there), but the distant hollow look and feeling you get from her that is hard to take. It feels each day like I'm losing more and more of her. I noticed this feeling from her shortly before we left the hospital, but each day has gotten worse. Its not until today that I have begun to really feel that hollow feeling from her, before it was just that she was so tired all the time, now its as if part of her is no longer there.

Day 9 Chemo

Starting last night is the first time we have started to see that the Chemo is making Avarie not feel well. She is having a lot of stomach pain, not nausea, just stomach pain. We called the oncologist last night and he said that is normal, just to give her some more of her stomach meds and try to get through the night. She made it through okay, but the appetite has started to kick in. She woke up during the night asking if she could have top ramen in the morning. She has been eating all day, it is a wonderful change from the not eating and losing 4 pounds. 4 pounds doesn't seem like a lot for an averaged sized person, but a 4 year old that only weighs 39 pounds to begin with, 4 pounds is quite a bit. She is doing a little better with pain today, but I am starting to see the chemo taking its toll on her. She is becoming paler and more lethargic. I know she has to go through this to save her life, but it doesn't make it any easier to watch.
We didn't find out the info we were hoping to yesterday, they thought the results should be back in this next week. We will start going 2 days a week now, on Mondays for blood work and check ups and then on Wednesday for Chemo and more blood work.
We did get the donation account set up, it is at Wells Fargo in both Avarie's and my name.
Thanks for all your thoughts and prayers.

Avarie first day of out paitient.

Hello there this is Craig,( sorry in advance for the length) Avaries dad here. I wanted to give everyone an update on Avarie and how everything went today and is currently going. Well I think we all were a little nervous about today even if we didn't talk much about it before hand. I know between trying to break Sawyer into his crib, Avarie waking up and knowing we were all waking up early to embark on a trying day would lead to little sleep. Jenell was up around 6:00am I got up around 6:30 and one by one got all the kids ready for there destinations. Addisen and Carter went across the street to the Boes' house (Thanks a bunch) and Sawyers grandpa Giles met us at the hospital to take Sawyer to his grandma's house. I would be lying to you if I said there was no stress involved in this event as there was some. Jenell and I learned a great lesson we each need lifting and support from one another. This will be one of the most important things we can do for each other. Avarie was quiet the whole way to the hospital and you could really sense the anxiety from her little body. We tried our best to assure her that everything was going to be alright and we would be there for her but the fact was she knew she didn't like what happened when she was at the hospital before so our assurances were of little help. We walked into the hospital I was carrying Avarie just like you would imagine carrying a wounded person from a scene of a traumatic nature. Arm at back under shoulders, other arm under knees. It makes me feel as though she is so helpless even though I know she is doing better and moving better it still is hard and makes me very grateful for the use I have of my joints and limbs. As we approached the elevators I could feel her getting more anxious and when we finally went through the day treatment unit door she was starting to let us know she was not very happy. I went into a family type waiting room while Jenell went to register. The room had a couch a nice soft chair and lots of books and toys. Avarie wanted nothing to do with any of it. I tried to offer movies and all kinds of fun things to help her relax but she just wanted mom to hurry up. Then they wanted to get her height and weight. Well she absolutely was not going to stand up and made that perfectly clear so the nurse weighed us together and when Jenell came back she weighed me to get avaries weight. The happy reunion with mom was short lived because right after mom came back into the family waiting room they took us into another little room here they were going to access Avaries buddy (port) for the medications she would receive during her surgical procedures. Avarie was SCREAMING as they removed her clear tape and suture tape from the port site. There was a music therapy lady who was in the room to try and sooth Avarie with her harp playing. She may have been the back ground music to the screaming but the harp held no magic in its strings. They finally put the line in the buddy and we could back into the waiting room where we would wait for the results of the blood draws to see where she was at. They gave a mini DVD player with a Barbie movie but Avarie cared very little for it and fell a sleep shortly after it started. The nurse came in about 45 minutes later and told us thing looked ok to proceed and the doctor followed with some info about wanting us to come on Mondays to so they can keep a close eye on her and make sure her blood looks good and if not be prepared for a blood transfusion. She did say if results from the bone biopsy came back on the positive side we wouldn't have to do another one for a while. The same thing went for the lumbar puncture if there was still no cancer there she wouldn't need another one for awhile. Well it was time to into the procedure room and initially we had decided not to go in but after we sat in there for awhile I decided I wanted to so Jenell said she would stay up until the spinal. The anesthesiologist had a new ipod and was going to be using them pre procedure to try and help kids relax and take their mind off of what is going on around them. This he believes will result in less sleepy time medicine for the patient. Avarie really didn't want anything to do with it until they gave her the pain medication shot she was in a great deal of pain and discomfort as she had not had any since 8:00pm the night before. She then watched a little bit of Dora on the ipod then the doctor gave her the sleepy medicine. She started to fade a little and asked if we could pause the Dora until after we were done. The nurse and Jenell laid Avarie down and more or less she went under. The bone biopsy was first and was hard to watch the doctor push the tube needle into the bone not once but twice because the first sample was to small. I wasn't to happy about that. Then the spinal Jenell left and it was a good thing. The doctor couldnt get the needle that allows the chemo treatment to go in and the fluid samples out into the right spot. Avarie started to move and mumble and the anesthesiologist had to administer more and more medication. He even made the comment that this is an awful lot of medication and I could see had used it all. He was looking over at the doctor to see why she was taking so long. It finally was over they started to wake her and mom came in. When she woke up she was ready to go right then and she wanted her chicken and french fries that she had been promised but she had to lie flat for a 1/2 hour to avoid a bad headache. Mom would say 2 more minutes and Avarie would say no more 2 minutes I'm hungry now she was not happy. They needed to give her some oral pain meds before we left and she got to use the wheel chair and that made her a little happier. On our way to pick up Sawyer we got a McDonald's 6 piece big kids meal so we would have some left over for sawyer. She ate 5 and could have kept going. When we got to grandmas she was really tired and just was there on the couch. That has been what she has been doing here at home since we arrived. She is uncomfortable, tired and hurting but she is glad to be home. I just want to say thank you so very much to every single person who has blessed us with their kindness, their prayers, their desire to do anything they can to help. I know I have personally been lifted by all the prayers and thoughts. I also know my family has and especially little Avarie. A whole lot of people want to know how they can help I can say that Jenell has had elves across the street clean the house and everything under the sun while she was at the hospital and it was beautiful. I do think even though it would be hard to allow people to see your messy house this could be an area of service. We have every offer under the sun for help so forgive me if I have forgotten that there is no need to state this. People have also asked if they can donate financially to Avarie for her care and the costs that surround it. Jenell started the process today of setting up a donation account at the well Fargo here in town and it should be up and running by tomorrow or Friday. I cant say enough thank yous to family and Friends there are so many. I love all of you.
God Bless you All

Avaries Daddy

Day 7 Chemo

Today was a good day in many ways. Avarie started walking a little bit, with help, her legs are still wobbly. She also started eating a little more, which is good because she has barely been eating since all of this happened. There were days where all she had was a Popsicle. So it is nice to see her starting to get a bit of an appetite back. Except she claims to not like anything any more. Everything you ask her she does not like, even if you were to offer chocolate. Strange, but her taste buds seem out of whack.
There is no really big thing to report from today, except to say I am exhausted. I can not pin point any one thing that happened today to make me exhausted, I just am. By the end of the day it seemed like every single voice in this house was all talking at once and they were all trying to talk to me. I want to make sure I am giving everyone enough attention. All of my children need my attention and I feel like they are being neglected in some way. I know its just my mommy guilt, but I am trying hard to make sure they all feel loved and like they are getting enough mommy time.
Tomorrow is a big day for Avarie. She goes in really early in the morning for another spinal tap and a bone marrow biopsy, plus another dose of Chemo. We should also find out what kind of genetic make up her leukemia has, if it is a t-cell leukemia or a b-cell. We are hoping for b-cell, t-cell is harder and longer to treat. Also we are still hoping for a clean spinal tap. If they find any leukemia in her spinal fluid she will have to under go radiation to her head to treat it. The brain protects itself even from the chemo, radiation is the only way to treat it completely if it gets in there. So we're hoping for a bunch of things tomorrow. I hate the thought of even going back, worried what will happen.
I will update this blog as soon as I can tomorrow so everyone can know any results that we get, unless we end up back in the hospital, that is one of my new worries. Every time we go in if her blood counts are too low, or if they see anything that warrants any concern and there is a long list of possible things for concern, things as simple as a runny nose.
I included this picture so everyone that was unable to visit us could see where we were for all that time. It was a small room, but we managed. Avarie is sitting in the wagon, she liked to be in the wagon, I think it was a safety thing to her. As long as she was in the wagon nothing bad was going to happen. The bad things like blood shots and medicines only happened when she was in her bed, so she liked the wagon a lot.

Day 6 Chemo - First Day Home

Today has been a pretty good day for Avarie. She is starting to use her pain meds a little less, which is great. She still hurts some but I think she hates taking the medicine so much that she is willing to deal with the pain.
Avarie has started to understand that her hair is going to fall out and she says that she doesn't want a "boy haircut" or she says she doesn't want to look like daddy. We've talked about all the pretty hats she will get to wear, but it still doesn't make it easy. She's handling it well for now. I worry how she'll react when it actually happens. They say it happens around week 3 of chemo.
We have had so many people ask us how they can help and honestly I just haven't known what to say. My mom called me today with an idea. My parents have heard of people setting up accounts where people can donate to help with costs. I have such a hard time with this because I feel like I am asking for handouts, but this is definitely something that would help. Finances have always been difficult but the added costs of traveling back and forth to Portland and Craig out of work for the last week has definitely put some strain on us. Not to mention trying to eat when your staying at the hospital, that is not cheap. I have also had to give up working for my dad. I usually only get about 5-10 hours a week, but that little bit of extra money helped a lot. There is no way I can do that now. Anyway this is an area that we could use help. So I am sucking up my pride and letting people truly know where they can help if they are willing or able. I am hopefully going tomorrow to set up the account. My dad tried to do it for me today, but they need my info. So I will update with info on that when I get it.
As far as helping with groceries, we are well stocked. I never made it to the grocery store today, but the grocery store came to me. Sister Mattson, from my ward, brought by all those groceries last night, and then Sister Trainer actually went grocery shopping for us today and showed up with even more. We are well stocked and it is just such a relief. I was not looking forward to going to the grocery store. It takes so long and then you have to put it all away. I am still trying to get everything from the hospital put away, along with all of my kids things from staying overnight with both Grandma's. Grandma's have a tendency to spoil, they all came home with more then they left with.

Update to Day 5

We are home. Her labs came back still showing higher signs of Uric Acid and Phosphorus, but they were going down so they let us take her home last night. We went to pickup all of her meds and "oh my goodness" it was a grocery bag the pharmacy handed us. We were prepared for a lot of meds but actually having them there and trying to get them all straight was a little overwhelming last night. I think it will just take a couple of days to get it all down.
So it is great to be home, and so far everything is going great. It was wonderful to sleep in our own beds last night. Now I just have a lot of laundry and putting things away to do. Oh yeah grocery shopping too. We had someone in our ward show up last night with about 10 bags of groceries from someone in our ward. It was amazing, unfortunately we still need some basics. So off to the grocery store I go.

Day 5 Chemo

So we were going to go home today, but a couple of Avarie's blood levels are off. She was taking a med to help with the PH Balance in her blood that the chemo can throw off. They stopped that med last night and then her uric acid levels rose today. They want her body to be able to take over and get rid of all of the dead leukemia cells, they just give her the med in the beginning to help her because in the beginning is when there is the largest concentration of dieing leukemia cells. They are going to test her blood again in a couple of hours, but they are pretty sure they want to watch her at least one more night. Also her phosphorus levels were up. I don't know what that means, I forgot to ask. I'll have to ask the next time they come in.
So I think Craig is going to come up and stay the night with her tonight and I will go home and see my other kids and get them off to school in the morning and then come and pick Avarie and Craig up.
Her pain is doing much better. She is off the pain med drip, where they were just keeping her at a constant level with the ability to push a button for additional pain when it gets bad. She is doing great just taking oxycodone right now with only occasionally needing to push the button.
There is still a possibility she may go home tonight if her levels come back really good, but it sounded like they really wanted her to stay one more night. I'll keep you informed.

Day 4 Chemo

The reason I am keeping a count down as my title is because we are counting down to day 29. She will be on a solid schedule of chemotherapy for 29 days and then depending on how her body responds at the end of this round of chemo. If she responds well then she will go into the low category and chemo will be mild with occasional larger rounds. There is also an average and a high category. We really want to be in the low category, life will be easier for her in that category.
She was going to have a chemo treatment today, but they have decided to wait until the morning. The chemo drug that she was scheduled to receive today can cause kids to have an allergic reaction. She is not suppose to receive it until a full 4 days after chemo has started and since she started in the evening she could not receive it until tonight and they don't want to give the drug with out Dr's here. There are always Dr's here, but they would rather it be when her Oncology Dr. is here and not just a resident. The drug is suppose to be given between day 4 and day 6 of chemo, so it is fine for it to be given tomorrow.
Today has been pretty uneventful. Avarie has had a pretty decent day. She was actually herself for a little while when Andrea, my sister, dropped by with a couple of her kids. Avarie really perked up. She actually played and smiled for almost a half hour. Then she began to get tired. It was nice to see her perk up. It is encouraging.
Thats about all I have to report for today. We should be going home tomorrow. I am really looking forward to being at home and sleeping in my own bed and seeing my baby. I really miss him.

Day 3 of Chemo

Avarie started chemotherapy about 3 hours after her surgery on Wednesday. I hated watching them bring in the drugs and watch them put them into her IV knowing it was chemotherapy. It is such a mixed feeling. Yes I want you to save my daughters life, but every mommy instinct in me wanted to yell "No I won't let you poison my baby", that is what it felt like, like someone was poisoning my child and I was sitting there letting them. I know she has to have it to save her life, but that surprisingly only makes it a little easier. Every instinct is to protect your child, and chemo is poison. It goes into your body and starts killing bad and good things.
I was expecting chemotherapy to be different then what it has turned out to be. I thought it was a big bag of poison, and I pictured it white for some reason, and I pictured then hooking her up and it dripping into her, and then within and hour or so, I pictured her getting really sick. Thats not what chemotherapy is at all. Chemotherapy is actually two words, Chemo is the bad stuff, the stuff that will make her sick and lower her immune system, the therapy part is the other drugs she takes to help fight off the cancer also, like the steroids. She takes the steroids every morning and night, but the chemo she will only receive about once a week. She will come in every Wednesday for her chemo. Different weeks call for different chemo drugs. It is made up of alot of drugs not just one. And so far there has been no bag of white fluid dripping into her veins, like I pictured in my mind.
The best part of all of this is, so far she has not gotten sick at all. She is tolerating the chemotherapy pretty well. The worst part so far is the intense mood swings caused by the steroids. And supposedly this is going to get a whole lot worse. Honestly, I can't imagine it getting worse, I am already barely hanging in there with her insane grumpiness. Part of that I know is not from the steroids, but from the fact that she has been through a lot in the last week, let alone the last several months that her body has been being taken over by this disease. And then since we have been here she has been poked, and proded, cut into, had bone removed, had spinal fluid removed, she has wires coming from all parts of her body, way too many doctors coming in asking in her little mind way too many questions and every four hours around the clock nurses taking her vitals. There are many more little things she has gone through, but I think one of the hardest for her is the loss of any control she had over herself. She can't get out of bed if she wants to, because she can't walk, she has to depend on someone to lift her out and carry her everywhere. She has people telling her she has to take this medicine or hold still for this. I think she is emotionally shutting down. Everyday I have noticed it more and more. She is unwilling to make eye contact with anyone except me and her dad, she stares at anything she can and just completely acts as if the person isn't there. She does this even with people I know she would be excited to see. I talked with the social worker and the Dr's and Nurses about it, they all said that this is perfectly normal, its just hard to see.
Tomorrow she gets her next round of chemo. It is a shot that is given directly into the thigh muscle. I am not looking forward to that, I know she is going to be histerical. She has to stay for at least one more day after that treatment to make sure she does not have an allergic reaction to it and then she can go home. So it is looking like maybe we will go home on Sunday. That is the plan right now anyway. The only things that could hold that up are: a bad reaction to the shot, an infection or not getting her pain under more control. The pain issue has gotten better each day, but I was hoping and I think the Dr's were too that she would be a little better today.
I'm hopeful for tomorrow.
On an exciting note, I found out that Avarie gets to do a Make A Wish. So if she wants to, and I will help her know how much she wants to, she will get to go to Disneyland, or Disneyworld when she is feeling a little better. And not just her, our whole family will go all expenses paid. It is an amazing thing that they offer this for kids, because she is going to go through so much, our whole family will, it is wonderful that there will be something fun for them to look forward to.
So everyone reading this know that today we are ok. We made it through another day and are surviving. They have told me to try to be prepared that it is going to get a whole lot worse before it gets better. Its just hard to prepare for something that you can't even imagine. No one knows exactly how she will react to it all. so for today know that she is surviving, she is alive and to me that is all that matters. I told the nurse today, all that matters to me is that I have my daughter alive at the end of all of this. I know it will be hard for everyone, but I know we will survive the difficulty of it, with the help of our friends and family and most importantly the Lord. He has blessed us so much through all of this. I have had a couple of people say to me that they wish it wasn't me going through this, that I have had to go through enough over the years, but I ask all of you to think of it this way; Yes I have been through a lot, but that was just testing ground for the greater challenges in my life. It was preparing me for this. What if I hadn't gone through some of the tough things I have had to face, then maybe I wouldn't be as strong as I am now, perhaps I wouldn't truly know that the Lord really does only give us what we can handle and so to do so he had to prepare me to handle more. Now keep in mind I am having an ok day today, in a week or so I may be having a difficult time and I may need this reminder of this from all of you. But I know that the Lord loves me and my daughter very much, and I know that he has a lot of faith in me to trust me to get through this. I do wish my sweet baby could be saved from the pain she has to face, but she is so strong, she will survive this and will hopefuly touch many lives around her.

The Beginning

I wanted to start a blog for everyone to be able to follow and know what is going on in Avarie's battle against Leukemia. So I started this blog for friends and family to keep informed. If you read the blog on my blog site then you have already read this story. I just copied and pasted it here for anyone that didn't know how we got here.
Avarie was diagnosed with Juvenile Rheumatoid Arthritis back in early August. If you are interested in that whole story, because it was a long process to get to that point, you can go back to my personal blog at jenellgiles.blogspot.com and read up. I have decided just to start this blog with the most current info and not spend too much time recaping all of that. So the following blog is actually dated from October 8, 2008.

We know now that it was never Juvenile Rheumatoid Arthritis. We think that it was masked because her body just had begun to get sick when she received the ankle injections. The steroid she received during those injections masked her cancer. Steroids are a huge part of the chemotherapy drugs she will begin receiving. Cancer does not like steroids, so that is why it masked her discomfort and left her with out pain for so long. Meanwhile though the cancer continued to grow with in her.Then this last thursday night we put her to bed, no problems, she was completely happy and fine. She fell asleep around 9 and then at 11:30 she had crawled to our bedroom door screaming in pain. We were up most of the night and only slept the couple of times she was able to cry herself to sleep. It was a horrible night. The next day continued to be the same, except she had also completely stopped eating. I was fine most of the day with her not eating I could see how much pain she was in and understood if I was in that much pain I would not want to eat also. But I had been able to get the Dr's to call in some Tylenol with Codine for her and there was no way she could take it if she didn't eat something first. I could not get her to eat anything. My mom even stopped by and brought her sour patch kids, which she loves and we could only get her to eat one. Around 3 the Rheumatologist Assistant had mentioned that perhaps we might want her looked at to just make sure we weren't missing something before we started drugging her and then masked something else, perhaps this wasn't a JRA insident, maybe she suggested there could be something else going on, since it was in her abdomin that she was complaining so much about. I really thought it was just the JRA pain, because this pain level was about the same as before when she had that flare up, but in retrospect this one was a little worse. So I took the kids to my sisters house and took Avarie, to Legacy Salmon Creek Hospital. Once the Dr. came in she was very concerned about her pain level and discovered her large spleen right away. But Avarie also was having A LOT of pain on her right side so they were also very concerned about an appendisitis. She proceeded to have blood work and an ultrasound. Andrea told the ultrasound story for me, except the part where the ultrasound tech afterwards said to me "that was a nice little song, I don't know what a temple is, but the song was cute". (missionary moment)The ultrasound revealed her spleen was twice the size it should be, and her liver was slightly enlarged(didn't find out that part until yesterday). But they couldn't get her appendix, so she then had a CT scan. That revealed her appendix was fine, but the dr was very concerned about why she was having so much pain. Her blood levels came back fine, except for her CRP levels(elevation levels) 0-10 is normal and she was 81. So they admitted her and had her transfered by ambulence to Legacy Emanuel in Portland. There her pain increased and we continued to meet with many different Dr's all very perplexed by her case. They all came in saying they were very interested in her case and were all scratching their heads, I just kept thinking I wish we could call Dr. House.So then on Sunday the Hemotologist came in and met with us, she explained what she wanted to do. She wanted to do a bone marrow biopsy and check for leukemia. At that moment I knew. It was the first time any of the Dr.s had mentioned cancer, but I knew and when the rheumatologist came in later to check on her I told him that I thought we were on the right track with the hemotologist. He said he did also. He sat and explained why they were thinking it might be leukemia. He showed us her blood levels for the last5 weeks. All of her white blood cell counts were perfect, which has them perplexed, but so were her platelet and hemoglobin counts, which actually is part of the reason he explained that they were so perplexed. Her CRP levels(inflamation levels) had jumped saturday to 168 from 81 that is tremendous inflamation in the body and her blood levels should reflect that. They explained that her platelet count was way off for inflamation that great. Normal platelet count is 140 to 440. Avarie was around 180 to 200 always, with her inflamation so high she should have been in the 400's. Craig was having a hard time listening to the rheumatologist, I think we both knew then that it was leukemia. He had to excuse himself and left the room. He said he needed to get something to eat, but I know he needed to take it all in. With all the other Dr.'s running so many different tests it all just felt like well maybe, like they were testing for Lime's disease and some farm animal thing, we were just kind of scratching our head thinking well I guess maybe, but when they took this turn on Sunday it felt right.The next morning she went in for her bone marrow biopsy. I stayed for the whole thing and watched most of it, I had to turn my head when I saw them pushing this huge thing into her hip. She told me afterwards that if it wasn't leukemia then it was definitely some kind of chronic disease because her bone was too soft to push through. She also commented on her paleness, which to be honest I just chalked up to being from a pasty white family, but when she placed her hand next to her back there was a very big difference. I lifted my shirt a little thinking I would show her that see I am white like that too, but I wasn't. I am definitely white-white, but I still have a yellow pink tint to my skin, I realized Avarie didn't, she was almost as white as a piece of paper. They told me they would send in her labs and I should have an answer by the next afternoon. They also take a small smear and look under a microscope there in the office. If it was completely obvious from that they would come and tell me, but its not always obvoius and not always completely reliable, so they would only tell me if they were sure.About two hours later the Hemotologist, Dr. Olson came in to our room. She had on a bright pink jacket with poodles all over it and sat down and started making small talk with Avarie, but Avarie was not in the mood and did not want to talk. She was really really grumpy and started to fall asleep. Dr. Olson then looked at me and told me that it was Leukemia. I don't remember how she said it, and I was ok with it at first, because I had expected it. But as she began to explain what they needed to do next and I started to understand what my baby was about to go through, I wasn't ok.I am doing fine now. Really I am at peace with this. I am devestated to think what my baby is going to go through, but I am just so grateful to have a diagnosis and know that there is a cure. It is a 95% success rate and that is awesome. People die every year from the flu and chicken pox, so even those are not a 100% survival rate. I just have to remember that. She will survive this and she will be ok. It is going to be a long and hard road, but there will be an end, and at that end I will have a healthy, beautiful and incredibly strong daughter. She is already such a strong spirit. I know Heavenly Father blessed her with such a strong spirit so she could overcome and fight the things that she would have to endure in her young life.Everyone wants to know what they can do to help, the best thing I can tell all of you is continue to remember her and our whole family in your prayers. I worry about my other children and how they are going to get through all of this. It is going to take a lot of attention away from them and I am so sad to think of them feeling lonely or left out. There are social workers that work with the family through this process to try to help with that, and the Dr's made a huge point to me to let me know that the whole family is needed and used during this process. They will include our children in her recovery and include them in all that they can to help them feel part of the process. I am so appreciative for that.So today is a huge day for Avarie. She is getting ready for surgery at 1:00 today and will begin her chemotherapy today also. Her surgery is a spinal tap to see if the cancer has progressed into the spinal fluid and to have a Port or "Buddy" put it. The Buddy allows them to access her veins directly with out having to always poke her. So she won't have to have "blood shots" as she calls them any more and some of her meds will be given to her through that also, it will be used a lot. Oh yeah, incase any one didn't know, we did find out what kind of Leukemia she has, it is A.L.L. In case anyone starts looking it up online, it is important to know what kind so that you see the right information. ALL is the most common form and the one with the best survival rate, we are happy that it is that and not one of the other forms.We are so grateful for all of the love and help we have received during this time. Our families and neighbors have been awesome. We are so blessed to have so much love and help. I don't know how we would have gotten through this with out all of you.So check back soon for updates. I am hoping to do most of our updating through the blog instead of the phone. Later when things calm down updating over the phone will be easier, but the blog would be easier for now.