Letters to Avarie

Avarie, this post is for you. These are letters from your brother and sister in there very own words and they choose their own pictures to smile at you with.


Dear Avarie,
I hope you feel better and that mommy will take care of you. I wish I could be there to help you through your surgeries and through your disease. I love you. When you come home I want to play with you. I want to play Littlest Pet Shops. I got a new penguin that we can play with and chinchilla. You can play with the Chinchilla and I can be the penguin. Does that sound good? Hope you feel better soon. Love Addisen.


Dear Avarie,
I love you Avarie. When you come home I want to play mom and dad with you. Next I want to snuggle with you. I hope you come home soon. I said the prayer last night and I said to please make you better soon. I love you soooooo much. Love Carter

HAPPY THANKSGIVING!!!

Happy Thanksgiving everyone!
This was a hard post to write. But not because I am sad at our current misfortune, but because being in this situation has caused me to reflect on every small and large blessing I have in my life. I think we always remember these blessing, like being grateful for the roof over our head and the food on our plate, but this year has been a year where we have almost lost everything and yet still have so much. Yes our daughter is extremely ill, but I am so grateful that she is getting better every day just a little. I am grateful for every tiny little smile and every blood count that comes back good. These are things that are so easy to just take for granted in our everyday life we just expect our bodies to work or the food to be in the fridge and the rain off our heads. For some people that is just a fact of life that those things all happen, but when it doesn't it is amazing how easy it is to just sit back and see all of the tiny things we are grateful for that we didn't see before. So this Thanksgiving I am grateful for the enormous amount of blessings in my life. I laid in bed(hospital bench/bed) thinking of them all last night. It was overwhelming to be able to think of so many things to be grateful for. Yes everything may not be perfect in our life, but is any ones life perfect, I hope not. Perfection leaves us nothing to hope and strive for. So even though my daughter may lay in a hospital bed I am grateful that she is able to be here in this hospital to be receiving the care that she is and to be on the mends. She may still have a very long road to go, but I am grateful for the advances in medicine that give her that long road to be able to travel down.
I wanted to make a list of the top 10 things I am grateful for, but honestly I couldn't number them and there were too many. So instead let me just say that my life is blessed and full and yet full of challenges that I am thankful I have the strength to meet head on.
I hope everyones Thanksgiving was wonderful and full of great food and great family and friends. Even though Avarie and I were not able to be surrounded on this particular day by all of our great friends and families we are surrounded by them through prayers and thoughts and charity. We thank everyone for their love and support. That is one of our greatest blessings through all of this is to have so much love and support. We love you all and are so truly grateful for all of your love that we feel everyday from all around us. Thank you and Happy Thanksgiving.

First day with a WHEELCHAIR!

Avarie was fitted for a wheelchair today. She will be in one for a while because I found out that they will not put her in the rehab program until her numbers are good for a consistent length of time. That will be a few months from now, I think. It is all a little unclear to me. I think it is unclear to them too, it is just a take it as it comes right now. I tried to take a picture of her in her chair, but my Sister has my memory card and so I couldn't get the picture, sorry. Believe me it was cute. Although it is a little sad looking too to see that they make wheelchairs that small. She did not like the wheelchair at all. That's not a huge surprise there is very little Avarie likes right now. We just do it anyway, our goal is to have her up and in it at least 3 times a day. We are trying to increase her endurance and trying to not let her stay bedridden.
They have started to back track on the idea of us going home for a couple of days. Avarie just still has fevers. They are not 104, but they are still around 102. Cancer kids are typically hospitalized if they have a fever of 101 or more or if they have a fever of 100.4 for more then two hours. Fevers are a pretty serious thing for them. And the 5 antibiotics she is on is a problem too. They are hoping over the next 24-48 hours we will have some answers on some of this and hopefully be on track to getting these infections completely under control, but they are just starting to talk more like "well we hope you can go home for a couple of days" instead of "we are trying to get you home for a couple of days", just a little difference in talk, but they keep saying the words like "hope" and "don't be too disappointed if she's just not ready". Honestly I knew it was a long shot to begin with, but I am a little disappointed to think that it may not happen. I miss my family just being together.
Craig was able to come up to the hospital today for a couple of hours. It was nice to visit with him. Thank you to everyone who made that possible today. We really enjoyed just being able to talk to each other and be in the same room for longer then 20 minutes.
Oh a cute note for my sister in law Becky. Avarie's major motivation right now is baby Grant. That is Avarie's new baby cousin he is 3 weeks old and he came to visit Avarie Sunday night. She acted like she was totally not interested in the baby, because she does not like to let anyone know that she cares about anything right now, but I knew she was very excited about the baby. She now will only do things for him. Like yesterday they were doing an activity where they frosted and decorated turkey cookies. The only way we could convince her to do it was to do it for Grant. Of course he can't eat it so she said that Becky could eat it and then Baby Grant could get it through his mommy. My kids were obsessed with this idea the whole time with Sawyer too. The nurses all thought it was so cute. She ended up really enjoying making the cookie. Then today in her wheelchair we tried to convince her to color a picture on a giant piece of paper that was taped to the wall. She refused and threw the pen. Again we used Grant for the motivation. It worked, kinda, she still cried through the whole thing, but she at least made it. So Becky it is hanging on her hospital wall for Grant. She wants you to put it in his room. She says since he is a new baby he doesn't have any pictures of his own.

Hospital Mess Up

We had expected to get the biopsy results today from the nodule they removed last week, but when our Dr called to get them they did not know what she was talking about. They had never received any material to analyze. The "microsomething" department had gotten samples but some how Pathology never got any. My Dr was livid, it helps that she is the medical director of the Oncology and Hematology Department, so she carries a lot of weight around here. So they have started a full scale review of the departments to find the breakdown. I guess I'm too laid back about it, I just fell like "Darn, lets just do it again" I mean everyone makes mistakes. I hope they fix whatever went wrong, but I don't want anyone to lose their job or anything. But it seems to be a really big deal because I have overheard two conversations about it from Dr's and Nurses that I don't even know. So they had to re biopsy today another nodule. The Surgeon then hand walked it over to Pathology himself I am told.
She continues to get better and better. Her skin is clearing up for the most part. There is still the e-coli sight that is oozing, but is looking a little better and the redness on her back is almost gone. The soars all over seem to be healing and some of the nodules have disappeared, but there have been several new nodules that have just popped up yesterday and today. So hopefully this time we will get some answers on all of that. The only really bad lingering thing is the fevers. She continues to run fevers around 104-105 almost around the clock. The Tylenol breaks them, but they just re popping up.
They gave me some exciting news this morning they want to try to send her home for a couple of days this weekend. We don't know if we'll be able to actually do it, but we're going to try. First we have to get rid of these fevers. She will have to come back on Monday and be readmitted for her bone marrow biopsy and the start of her next dose of chemo. But if everything goes well this week and keeps improving they way it has in the last 5 days then they would really like for her to go home for a couple of days and have a break from the hospital. We will have been here at the hospital for 4 weeks on Wednesday. It feels like we have been here a lot longer and yet 4 weeks is a really long time. We still have a long road to go, so they want to give her a little break to go home and see that she does still have a home to go home to.
I'm not sure how it will work taking her home. She is still on high doses of fentanyl(pain meds). We are going to try to take the dosage down a little tomorrow and see how she does. Also, she does not eat or drink by mouth at all right now. She is being fed completely through her IV into her veins, we completely bi pass her digestive system. So her digestive system is not really functioning right now. Its not like we can just take the IV out and say OK go eat food now. So I'll have to ask the Dr's about some of that tomorrow. But at least there is some hope that we may be able to be home as a family under one roof again, at least for a couple of days. I miss my husband terribly. We just trade posts right now, never spending more then 20 minutes in one room together. Just long enough to give each other the info the other one is going to need to take care of Avarie and then the other one leaves with the other kids in tow. Its just too crazy to try to have all of the kids, mainly just the baby up at the hospital. We visit together for a little bit, but then he always wants to pull cords or push buttons or run out the door as fast as he can every time a nurse opens it. So we try to make the trade kind of quick, but we want Avarie to see her brothers and sister, so we try to let them visit for at least a little bit while one of us runs after the baby. Anyway, my whole point to that rant was to say I am looking forward to actually be able to sit down on the couch next to my husband and just be in the same room for a little while.

An AMAZING Moment!!

You will want to go and pause the music so that you can hear the video.
This was one of the best moments of my life. I got to the hospital with all the kids to visit Avarie and switch out with Craig. Avarie was so happy to see the kids, especially Sawyer she really loves the baby. She actually smiled at him!!! She then took her little princess CD player that my Aunt had gotten for her and played with it and even started to kind of dance a little. I know the last time I saw her smile it was during our first hospital stay back in late September. She smiled because the Dr's gave her some fentanyl for the first time. Fentanyl is stronger then Morphine and it makes you feel happy(so I am told). But she smiled then and colored a picture with me. It lasted for about 1 hour. That was the last time Avarie smiled or actually tried to do anything like play. So when we got here today and experienced this with her it was amazing. I am so overcome with emotion right now. I can't put in to words how hard it is to watch your baby sit and deteriorate and there is nothing you can do. She was honestly disappearing before our eyes physically and emotionally. So to have been given this moment with her has lifted all of our spirits. I can't stop smiling right now. For a few moments I had a part of my baby back and with it came a hope that I have not felt for quite awhile. I keep watching the video over and over. It was one of the best moments of my life and I was able to catch it on video.

Good News

We got some good news today. Her counts are almost into normal range. Her white blood cell count went from .8 yesterday to 3 today. 4.5 is a low normal count. That is a huge increase and we are so excited. It feels like we got an early Christmas present. Also her ANC went from .20 yesterday to 1.38, 1.5 is a low normal ANC. We are so happy today. Also she has had a normal temperature all day so far. She has not had a normal temperature for over a week.
They also have started to identify the infection. It came up positive for a Grand A Bacteria. I don't know what that means yet. They are still trying to identify the exact bacteria, Grand A is a classification for type of bacteria, but they still have to identify the exact kind.
Also my sister stopped by to visit her with her son, Jackson, and Jackson gave her a little present. Avarie actually took the present and opened it and played with the stretchy frog. Avarie does not play with anything right now and she does not acknowledge people very often. I was very excited to get good news today because I am feeling really guilty not being there with her.
We are all happy today and hopeful.

Just realized we have been in the hospital for over 3 weeks now.

Sorry we haven't updated today. I came home from the hospital and have been trying to enjoy my kids and honestly I am exhausted, but I am posting at midnight because my mind is racing and I can't sleep. Funny that I come home to get a "good" nights sleep and can't sleep.
The last two days Avarie has been incredibly emotional. We have had to give her Adavan often to try to keep her calmed down. Adavan is the drug they give people when they are having panic or anxiety attacks, it is a relaxer drug. She has just been through so much and I think now that her pain is beginning to be under control a little more all of her emotions are spilling out.
She asks frequently to go home now, which is wonderful that she is making that connection that there is a home to go home to. It is hard to try to tell her that she can't go home right now, but that if she keeps working hard she will get to go home soon.
We don't have any word yet on what type of infection or infections are invading her body. The biopsies take a little longer to grow the cultures. We're hoping to have some answers tomorrow but it may not be until Monday. They started her on a very heavy duty anti-fungal medicine last night. This particular anti-fungal medicine is kind of a scary drug that is why they held off giving it to her. But they have a suspicion about what may be wrong and if it is correct then it is important to start treating her right away. They think its possible she may have a fungal infection called Candida. Basically Candida is a thrush or yeast infection, normally no big deal, but when someone is immune compromised everything becomes a big deal. Candida can become a systemic infection and invade the whole body causing organ damage to ALL of your vital organs. She did have a very bad thrush infection about 2 weeks ago, right as they began wiping out her immune system. She had been on an anti-fungal, and that drug is a very strong one, but sometimes things can be immune to certain drugs, so they have started her on this other drug. It required her to have a potassium transfusion last night and to be hooked up to heart monitors all night. They only do a 1 hour drip of the medicine as a trial at first to see how she respond, here are a lot of possible side effects. She did great on it though and so today she got the full dose, it takes 4 hours to administer the drug. So far so good.
On a really good note, her ANC was up to .20 or 200 today. That means her immune system is continuing to come back. She still has a really long way to go. Anything under .5 or 500 they will usually hospitalize the kids for their own protection, so she is still very low, but it is a start. We are hoping in the next several days to see some good jumps in her numbers.

Grateful for A Few Small Things

Early today we received some really good news. Avarie's immune system is starting to return. Your immune system is made up of many different types of cells, the one that we watch to know how her immune system is functioning is called neutrophils, I could totally be spelling that wrong, we always refer to it in an abbreviation called her ANC or ABS. Her ANC has been 0 for a while, but today her blood work showed some neutrophils. It was .14, a normal range is between 1.5 and 11.00. So yes she is still in credibly low, but it is at least registering and that means that she is on the mends. We didn't expect a return of her immune system until this weekend, so it came a little early, but we are all very excited to have it to help us fight these infections that are ravaging her body.
She also underwent some surgery today. She had the pic put in and a biopsy of one of the nodules, which by the way she has gotten several more since yesterday which the infectious disease control Dr did not think was a good thing. So he was very happy that she was already on the schedule to have one biopsied. They also biopsied part of her sinus and drained fluid from there. The CT had showed fluid built up there. When the Dr drained the fluid he told me that there was puss there so there was definitely some form of infection there, but we just don't know what kind. The frustrating thing is that she could have several different kinds of infections going on and they may not even be related to each other. It would be nice if it was all from one thing, then we could give one medicine and help fix the problem. Most likely there is just a lot of different things going on which means lots of different kinds of medicines. But hopefully we just get some answers. I am hopeful that we will have answers.
So although she is miserable today we are hopeful that we will have some answers soon. The Dr's are hopeful too. They even brought on a Dermatologist from OHSU today to consult and look at her. He agreed she is one sick little girl, but he too was hopeful the biopsy would reveal something. Although I should make a disclaimer that they have told me it is possible that no bug may show up in the cultures they take of all the infections but they are hopeful that something will show itself. So today is a day when we are grateful for the small things like the small bit of her immune system that is trying to come back. That one has given me a skip in my step today.

Will this all ever End!

If its not one thing it is something else. Everything is either a little worse or their are new things. The Dr's aren't sure what is going on, so tomorrow she is going to have a double PIC put in through her arm so that they can have more access to her veins.A PIC is another central line instead of a second IV that we have been using in her hand. Her veins are just too small to maintain a continual IV in the hand or foot. Then while she is under anesthesia she is going to have a biopsy on a nodule on her leg. She developed the nodules today, or at least that is when we found them. We have since discovered at least 6. They think that what ever infection is invading her has built up in a couple little spots on her body causing the nodules. So hopefully biopsying them tomorrow will tell us what is going on. She continues to run fevers over 103 degrees, they break with Tylenol, but they just return toward the end of the 4 hours and then we take Tylenol again.
She is also being taken off the NG tube (feeding tube) but unfortunately that is not a good thing. She is going to start being fed through her IV. That is not a normal way for the body to process food and so it is the least preferred way to feed someone, but she is just not tolerating her feeds and her brain has shown some shrinkage due to the lack of nutrition. I know that sounds totally weird and scary, but the Dr's have assured me it is OK and it will return, she is just lacking nutrition right now and the brain is made up of fat, so as she is losing fat through out her body she is also losing it in her brain causing a slight shrinkage. Obviously it is not a good thing, but they assure me that she is young and very resilient and that this does not mean she will be brain damaged, I don't know if there are any side effects to expect, I was a little overwhelmed to ask.
She also had another CT scan today to look at her lungs and to make sure nothing has popped up anywhere else.
There are lots of other things going on too, but honestly I am exhausted and not feeling much like talking about it any more. I am sorry if that sounds cruel or short, I don't mean to be, I am just feeling a little overwhelmed and tired by the days events. It has been a long and busy day trying to figure things out.
I am hoping tomorrow will bring some answers.
This is a list of all of the different Dr's and specialists that were in our room today, I just find it interesting to share this: Oncologist(several times a day), Oncologist Nurse Practitioner, Infectious Disease Control Dr., Cardiologist, Surgical Nurse Practitioner, Wound Nurse,Speech Pathologist, Physical Therapist, Occupational Therapist, not sure what to call the CT person who did the ct scan, Social worker, Case manager, and our nurses. It makes for a very busy day dealing with all of that and emotionally just very draining.
She did play with some play dough during Occupational therapy and that actually went well. It is at least one good thing that we can get her to start interacting more.

Just waiting things out

I came back up to the hospital this morning to find my baby girl happy to see me. She is doing about the same as last week. Right now we are just waiting things out and trying to stay on top of all of the infections and soar spots. She had another x-ray of her chest and abdomin last night but those continue to look about the same. Of course this is all second hand info I am getting, Craig was the one up here and sometimes like I said before I don't get all the exact details, but he sure has come a long long way. He takes such great care of her when he is here, I don't even worry anymore. It is so nice to be able to be home with my other kids and actually be almost completely mentally there with them.
Avarie continues to run fevers. They seem to be looking for reasons for them, but I just assume they are from her pnuemonia. I am looking forward to talking with the Dr tomorrow to get back in the loop of everything that is going on and ask my questions.
On a really positive note, we were able to get a van. Craigs oldest brother had a 98 Toyota Sienna. They said they held a family council and decided as a family that this is something they could do for us. They could give us their van. Craig and I have been blown away by their love and generosity. Its not like they have another great car to replace it with, they just simply drove it up here and turned over the keys to us. I have always had a hard time accepting help, and I had expected this to be right in that same category, but I think they were truly inspired of the lord because it is one of the first times in my life I have been able to accept something and just say thank you. I am always grateful for the help I receive whether asked for or not, but inside I am always feeling horrible that I have imposed on someone. I hate imposing on people, I will go completely out of my way to try and not impose. I am trying to work on that. I am trying to learn to accept the help when I need it and learn to ask for it. The asking part is still a soar spot for me, but I am trying. I am just so grateful to have such wonderful family and friends that truly help ease my burdens. There is no way I could be here for my daughter the way that I am able to if some of my burdens where not lifted by others. I am truly blessed to have such an amazing support structure. One of the nurses (Pam, shes one of my favorites) told me today that some of the kids don't have any family here taking care of them. They just push the nurse button when they need something, but sometimes that means they have to sit in a wet diaper for a while, or wait for some other need because the nurses are with another patient and they don't have someone there to attend to them. She said that those kids always take longer to heal because they don't have a someone there to love them and care for them. It makes me sad to think about any kid in this hallway going through anything similiar to what we are going through and that they may be sitting there all alone. I asked the nurse if there are volunteers to sit with them, and she said occasionally, but they really just want mom or dad. I am so grateful to everyone for their love and support that allows me to be here with my baby and allows my husband to be with our other children as much as we are.
I am still working on getting that video of Avarie, it just may take me a couple of days to get a good one. I want to post her doing something not just laying in her bed.

Quick Note

Just a quick note to let everyone know that everything is about the same today. She continues to have fevers and so they are upping her antibiotics, but otherwise she is hanging in there. She continues to be more and more awake only napping once a day right now. Unfortunately the rest of the time she is awake she is incredibly grumpy. Its like she saved all of her negative energy from everything that has happened to her in the last month and a half and is letting it all out.
I came home last night to have a little break and see my other kids and tonight Craig is coming home too. My sister in law is going to stay a night with her and let Craig and I actually spend some time together. My sister in law Lisa is an RN so I know she is in great hands.
I am definitely feeling re-energized after getting a break and coming home. I know I've got to start taking better care of myself and giving myself breaks. Its just hard to leave your baby when they're sick. But if I don't I have noticed I am not as patient with her as I want to be and should be.
Thanks for checking in on us today and I will update again later. I wasn't able to get her on tape the other day and now I am at home, but I will get her on tape and share it as soon as I can.

Breaking Points

We all have breaking points, I know and sometimes I wonder where mine is. I almost reached it last night. I don't get very emotional over Avarie's situation. Sometimes I feel like a robot just getting through and doing what needs to be done. Yesterday was not one of those days.
Avarie has had a big set back. She has pneumonia. They confirmed it with the ct yesterday. The biggest hurdle in all of this is the fact that she just completed chemo. The chemo that she got is a major destroyer to your immune system chemo. So over the next week the chemo will continue to destroy her immune system. Which means that the pneumonia may continue to grow and get worse because she has nothing to fight it off with. The antibiotics they are giving her can help some, but they can't cure it, it takes a combination of both her body and the antibiotics to fight to get rid of it. They expect her immune system to start to regrow in about 8-10 days from now. Then her body can start to fight it off, but until then we just hope and pray that the antibiotics can hold it at bay. The Dr's said they are concerned, this is a very critical point for her. That doesn't reassure me at all, but they are also optimistic since her pneumonia does not appear to be to bad yet. They have told us this is going to take a while to fight and as soon as she is able she will need to receive her next dose of chemo, which she is due for in less than 3 weeks. They are hopeful that she will be able to fight the pneumonia enough by then to continue treatment. So with everything that is going on they have told me to plan on being in the hospital for at least the next month. I honestly felt my mouth drop when they said that. Its already been over 2 weeks and I am going crazy, another month seems like an eternity. But it is going to take her that long to fight off the pneumonia and then get her next chemo which requires a minimum of 6 days in the hospital. At this point I am just hopeful that we can be home for Christmas. That is my new goal. I want to have her home for Christmas. I don't want her to miss Christmas morning with her brothers and sister, I don't want to miss it either.
I think we were all scared whether she would be able to fight this pneumonia or not, but my father in law and brother in law came up that night and gave us both a blessing. I knew then that she would fight this and get through it, I just also know that it is going to take a long time for her to. I feel better about it all today then I did yesterday. The only thing that is hard today is the fact that she is now very awake most of the time. Now don't get me wrong I am ecstatic over that fact, that is a great sign and a huge progress for her. But keep in mind she is a four year old girl who is extremely strong willed and is feeling absolutely horrible in every way possible. That combination does not make for a happy or pleasant child. Also we are pushing her to try to use her body in physical therapy and occupational therapy. She cries through most of it and I can tell it is really hard for her but she gets through it and tries her hardest to do the things they are asking her to. She amazes me sometimes. I can't imagine going through everything her body is going through and then to have to be forced to try to learn to sit and hold my head up again. She is an amazing child even if she is really grumpy most of the time. I know the grumpiness will eventually go away and I will have my happy little girl back again.
I started this post during the day but didn't finish it until this evening. It has been a very, very long day. I am going to try to get a little video of Avarie doing something tomorrow and put it on the blog. My aunts stopped by today and were so impressed by how vocal she was being, I wanted everyone else to be impressed and see that too. she has come so far in the last couple of days, even with this new set back she has regained that firey part of her personality. That fire is what will get her through this. I need to remember that on days like today.

Small Steps

Avarie continues to improve little by little. She was awake several times yesterday and was able to do physical therapy and occupational therapy. Not that she didn't cry and resist both, but she did do it. They have to do her therapy in her room because she has no immune system and can not leave this room right now. When I talk to her I can tell she is listening to me and she looks at me more. I can tell that she is slowly improving.
One of the Oncologist, Dr. MaGan, told Craig yesterday that they have all been stumped by Avarie. She said during their morning meetings that they hold every day they have all been trying to figure out what is going on with her. They had gone back over several of their cases in the last 6-7 years looking for anything that might ring a bell, but there was nothing. Avarie is one of their most unusual patients. In a strange way this made me feel some comfort and some fear at the same time. They feel like her improvement is a combination of the chemo and antibiotics, just like I thought but also they have been giving her some phosphorus and calcium and albumin through her IV. They think the phosphorus has been a big key too. Phosphorus is a very important part of your body functioning, we get it through nutrition usually, but since Avarie has been so malnourished she has been very low on it. I'm not exactly sure why because I haven't been able to talk to the Dr yet and Craig doesn't always remember all those kinds of details, he tries really hard, its actually really cute how hard he tries, but he's a guy and well guys just aren't great with the small details. I know that was probably totally sexist, but come on its true most of the time. Anyway I will be asking the Dr some of that today when I see her.
Right now Avarie is down having a CT Scan of her head, chest and pelvis. She continues to run high fevers around 103- 104 degrees several times a day. They can't figure out why all of her blood cultures keep coming back ok and so they are doing a CT Scan to make sure they aren't missing something. They also did a chest x-ray yesterday, but we haven't gotten those results and no news is good news here. If it was something bad they would have been in right away treating, so the fact that we haven't heard anything means things must be ok. I'm just sitting here waiting for her to get done in CT. I will post later on any results.
One quick comment. I heard recently a couple comments about a few people not liking the pictures I posted of Avarie. I just want everyone to know why I post the pics. There are two reasons behind why I do that and why I share in such great detail everything that is going on here. One reason is I want to fully document this for Avarie, so that she can look back on everything she went through and see how far she has come and how strong she is to have endured so much. The second reason is I have a lot of friends and family that can not come visit and I want them to be able to see what we are facing. It is definitely different to see it, it makes it so much more real for people and this is a very real thing we are facing and I want all who care and love us to be able to see the full extent of what we are going through. I know it can be hard to look at the pics but they are our reality right now. So I hope no one is too offended by it all but I intend to keep updating the same way because this is my way of creating a complete record for Avarie and for all of you.

Finally a Little Good News

Now it is only a little improvement, but today Avarie was actually awake for a little while. And while she was awake she let us talk to her and even looked at us a couple of times. She then also watched Dora. Craig and I are ecstatic. We can't stop smiling. It has been a while since there has been any acknowledgement from her that this is just huge for us. I think the chemo is killing off some of the leukemia and the antibiotics are working slowly on the infections and the pain meds are helping to ease some of it. I feel like we've turned a corner.
Craig is with her tonight and I am home seeing my other babies and just being able to take a deep breath and relax at home for one night. Then I will be back up there the rest of the week because Craig has to work. He has taken almost the entire last two weeks off because there has just been so much going on, but financially we just can't afford to take any more time off. Well honestly we couldn't afford to take that time off either, but it was necessary. I'm nervous about how the next couple of weeks will go, but I know we'll get through it and hopefully in the next couple of weeks we will get to bring Avarie home. My goal right now is before Thanksgiving.
Please keep praying for us and know how grateful we are for all of your continued support. I check the blog often and love reading responses and knowing who is out there. So everyone this is an order from the Giles Family, give a little smile right now because today showed us hope and that deserves a smile. So no tears today, today is a smile day.

I think today is Sunday?

Its crazy how you start losing time here. The days start running into each other.
Not a lot new has happened. Avarie is still completely bedridden and in a lot of pain, but I do see a slight improvement in the pain. And I mean very slight, but any little bit gives me hope. I am hoping another day of chemo and antibiotics will help to relieve the pain a little more. The chemo should kill the leukemia cells that are built up in her bones causing a lot of the pain, and the antibiotics should fight the infections. Its taking a long time to fight the infection because her body is completely defenseless, it is completely relying on the antibiotics to do the job for her.
Dr. Shardy (one of the Oncologist) came in yesterday and explained that they would like to test our other children to see if they might be potential bone marrow matches. She does not necessarily have to have a transplant, but they would like to see if one of the kids is a good match for her. If one of them is a good match then they may recommend doing the transplant. The first step is to see if a transplant is even an option, and if it is then we would sit down with an oncologist transplant specialist from Doernbecher to discuss options and risks. I may be totally wrong on this, but I feel like I already know the out come of this. I have a very strong feeling that my baby, Sawyer will be a match for her. My reasoning is actually kind of a long story, but many of you close to me already know it. I will post the story another day if it turns out to be him, the story just needs all the details to really give someone the full effect and impact his birth has been in my life.
My biggest concern with a transplant was the fact that it would make her sterile. She would never be able to bare children. That thought is devastating for me. I know there is adoption, which is an amazing option, but the thought that she would never feel her baby grow inside of her and experience giving life to another human being is hard to swallow for me. So I started researching freezing some of her eggs, but that is not a viable solution. Only fertilized eggs can be frozen for long periods of time, and that is not an option. Our Oncologist researched for me the option of having an ovary surgically removed and frozen. This is new research and does not have a lot of research behind it yet, because the few that they have done have been over the last couple of years and the girls are not yet old enough to see if it is actually viable or not. Maybe in 10 years there will be a great option for young girls faced with this, but for now there is not. What ultimately brought me peace about this, at least peace for the time being, is finding out that the drugs she is receiving for the Extremely High Risk Leukemia is already damaging some of her reproductive organs. This is not an absolute destruction, but it is a more then likely. That means that more then likely she will have fertility problems, or complete reproductive failure. My peace of mind comes from the fact that there is nothing I can do about this, right now it is more important to save her life and trust that the Lord will provide a way for her to be a mother if that is his plan for her. That is hard to swallow, but there is nothing that anyone can do to fix this. It just is what it is. I think I will deal with this emotionally later when she is older and I have to explain it to her. Right now my emotions only let me deal with saving her at all costs, and the side effects will be what they will be. You have to learn to give up a lot of control in life going through this. My husband will tell you that is definitely something I needed to learn.

A Couple Current Pics

Starting the new Chemo

Avarie started the new chemo yesterday. It seems to have gone ok, at least there were no allergic reactions from the drugs, they worry about anafalactic (not sure how to spell that)shock, but she was ok, no allergic reaction. She continues to run high fevers from her infections though, I am hopeful that today the antibiotics should help her turn the corner. Yesterday her blood work showed that her immune system was completely nonexistent. They track a number called her ANC, it shows how prone to infection she is, or whether she can fight an infection. Anything under 1500 means that she can't fight off an infection very well, and under 500 is grounds to put her in the hospital as a precaution, Her ANC has continued to go down but yesterday her ANC was actually 0, she literally has no immune system right now.
I came home last night to spend some time with my other kids. That is one of the hardest things for me is trying to balance that. The baby was so happy to see me, he hasn't left my side. The other kids are struggling too, Addisen was in tears last night when I told them that Avarie wouldn't be coming home as soon as we thought and Mommy was going to have to go back up there. I know I have to balance this out a little better, it's just hard, I am truly needed in both places, but I can't be in both places at the same time. I just have to start taking more time off from the hospital and coming home, its just so hard.
I'm not sure how Avarie did during the night last night yet. I haven't heard from Craig yet this morning.
They explained a lot about these new chemos to us yesterday. They're kind of scary drugs, but there is not really any other option, she has to have them. Also she will have to receive radiation to her head. She doesn't have to right now, but she will in the next month or so. They haven't given us an exact date on that yet. The radiation will just be to the head not the whole body. The reason behind that is that the brain is great at protecting its self. And all it takes is for one leukemia cell to hide out in the brain and survive into remission and we will be right back here again, only that time we will be looking at a Bone Marrow Transplant. We don't want to do a transplant, that is a last resort if everything else fails. It is very scary and has some very bad side effects like never being able to have a baby of her own, it would kill her reproductive system. There are a lot of other risks involved too, so we want to avoid that if we can, but if it means saving her life then that is what we will do.
We found out that this cycle of chemotherapy is 21 days. So yesterday was Day 1 of this cycle and then 21 days from then they will do another bone marrow biopsy and we will find out if she is in remission. If she is not then she will become a candidate for the Transplant. From my understanding that is the next step. She is on the "kick your butt drugs" right now according to the Dr's. So hopefully this works.
I'll update again tonight from the hospital when I go back up and get a feel for how she is handling everything then.
I know when a lot of you read this you are going to offer to go and stay up at the hospital with her. And thank you, but honestly right now that doesn't really help, there may be a time when it will, but right now there is so much going on and new information that it is important for me to be there learning it. The more I learn and know then the better advocate I can be for my daughter, and I truly understand that statement now about being your childs advocate. I have had to do that many times now and I am so grateful that I have learned what I have to be able to make those decisions. So for now it is important that I am there. And at home we are trying to keep things as much of a routine as we can. We have been having either Daddy or Grandma's come and stay with them. I am hopeful that we can keep it that way. I think it is the best thing for the kids to have as much of a routine as possible. But there again, there may be days when Grandmas and Daddy aren't possible to be there and we will need additional help. I promise I will let you all know when we need that. Right now meals and prayers are about the best thing I can say to do to help. Oh, another way to help is let us know if anyone knows about a great deal on a mini van. We are trying to get one, because we can't put Avarie into our current car at all now with her immune system. We have to find a new van. So the money that we have been trying to raise will go to help with that, but so far we're still searching for one we can afford.

The News is In

So we got the news that we thought we would get and its not great. Her leukemia has gotten worse since her last biopsy. Her leukemia rates increased from 13% to 30%. That was what they had felt would happen based on her blood results and they were right. They are hoping to start her new chemo tomorrow. She is now in the Extremely High Risk category for leukemia. This type of chemo means that she will be in the hospital for 6 days worth of treatment. So if they start tomorrow we will be here until at least next Wednesday. We won't know completely how she responds to that until day 28. This round of chemo is a 28 day schedule vs. the 29 day schedule that she just completed.
The Dr. that came and explained a little of what to expect thinks that radiation to the head is part of this treatment plan, but she did not have the exact treatment plan in front of her. There are so many different treatment plans based on lots of different things. The other Oncologist will be coming in tomorrow to sit down and really explain everything to us.
We have started her on some Fentanyl and that seems to be helping her pain, I think we still need to increase it a little more, but after the scare we had last night with her blood pressures I think we all want to be careful. Oh, I don't think I explained what happened last night. It was a really long night. Her blood pressures were really low and the came in around 2am and were talking about moving her over to the ICU. They then pumped her with a whole bunch of fluids at a really fast pace to see if it would increase the volume in her blood, which would hopefully help her blood pressure, that worked and so she didn't have to go to the ICU, but it happened again around 4am and they were not happy about it, but since she responded to the fluids so well they didn't make her go to the ICU. They also were growing more concerned about an infection that has set in in an old bone marrow sight from 2 weeks ago. It has been slowly getting worse and so they took a culture of it last night. The results came back about an hour ago, it is e-coli. Now before you all get too worried, ecoli is something that lives with in us and is actually easy to treat. Its the animal ecoli that you can eat that is the scary one. So they have started an antibiotic for it and it will hopefully start looking better tomorrow. She also has a few other weird soars popping up that we don't yet know what they are. They seem pretty confident that they will be able to treat them all with antibiotics, but she is very soar and uncomfortable from them.
Over all she is incredibly soar everywhere. Between the pain in her bones, the infections around her body and the gas on her tummy from the feeds, she is just pretty miserable. Oh yeah she also has thrush, pretty bad too, but they have meds to treat that too. I am grateful that we are here that we can have all of these things treated.
Emotionally we are all holding up pretty well. I think the fact that the Dr's have been preparing us for this news has helped. It gave us time to digest it and let it sink in before we actually knew anything, so that when the results came it was more a feeling of ok thats what we were expecting now what, and not an oh my goodness how did this happen.
Craig is up here tonight with me, I was suppose to go home tonight, but after the scary night last night and the new news tonight I just couldn't go home. So my mother in law is at home with our kids tonight. My plan is to go home tomorrow, I am sure missing my other kids. Its just this constant guilt thing. I feel so needed up here with Avarie and yet I know my other kids need me too. I am just going to make myself go home tomorrow. I need to see my other babies too and they need to see me.

Day 29!!!

So we made it to day 29, but to be honest it is a little bitter sweet. We are happy to have made it to this point, but things don't seem to be headed in the direction any of us had been hoping.
We hadn't updated in the last two days because emotionally I think we are just trying to take a lot of things in. The Dr's have started preparing us for some bad news that they think we will be getting. They have a theory and they want us prepared for it. Avarie's white blood cell count and platelet counts continue to drop. They told us this is actually not normal at this point in treatment. Her numbers should be going up at this point. The chemo should be killing off all the leukemia and her marrow should be making healthy new white blood cells. So far her blood tests are not showing that. They think that there is some other leukemia mutation going on. Its still ALL leukemia, but back when we were waiting for all that genetic testing they think that there was maybe one of the bad genetic things there that was just barely present so they didn't find it, but now that they have been killing off all of the easy to kill leukemia they think that bad mutation has taken over and multiplied. Everything seems to support this idea, and they will do the bone marrow biopsy tomorrow to confirm this. We probably won't know the results until Friday though. Even then we won't know the extent of what we are facing for several weeks after, they will have to do more genetic testing to discover what it is we are facing. So more then likely Avarie will be going into the "Extremely High Risk" category and will be undergoing a much more intensive treatment plan. They say her chances remain about the same, that is the good news, however it is going to be a lot more difficult and a lot more hospital stays. Honestly I don't even know what to expect completely, I haven't asked. I plan to ask tomorrow, I just wasn't ready to ask yet, but I think I am now.
She has also started running a fever tonight, one of her old bone marrow sites came open the other day and started to bleed due to her extremely low platelet count and has now become infected. They have started her on an antibiotic for it.
The good news today was that she didn't have pneumonia, they did x-rays because they thought they heard something in her lungs,but they came up clear. That was such a huge relief, because I just don't know if she could have fought off pneumonia, she is just too weak and her counts are just too low to fight anything. I am so happy to have that be clear and I almost feel I can face everything else.
When I am able to find out more info tomorrow I will update with the latest info that I can. Some of this is unfortunately just going to take time to figure out. That can be so frustrating sometimes because we just want answers now, we just want our baby back now, its had to be patient and watch your daughter suffer. I am definitely learning to be her advocate and speak up. It is amazing, the longer we are doing this and the more I learn the more confident I am with speaking up and making sure things are being done for her.
We'll update soon.

Just need to post.

I really am overwhelmed with emotion right now. I wonder what happened to my sweet and full of life little princess. I told Jenell I wondered where are little girl was and I couldn't contain my tears. We embraced and after I was done crying she told me she had looked at some photos of Avarie at the garage sale and was wondering the same thing. Then she showed me some pictures of Avarie I hadn't seen for some time and I felt both joy and sorrow. I was reminded of how special a spirit she has and was sad to comprehend a life without her. I know people say shes going to be OK and I am as positive as I logically can be and I leave the rest in our Father in Heavens hands. I also was reminded tonight by a sweet angel that there many people who have deep and true invested feelings in Avarie and our well being. That being able to add positivity to all of our lives helps sooth the weary soul. I have wonderful parents on both sides and there support has been nothing short of complete support and sacrifice. I also have wonderful brothers and sisters on both sides of the family who love me in spite of my imperfections. I also have a ward I love and am so grateful to for all they do and all the prayers and thoughts. I cant forget a little family who have taken on so many things above and beyond anything necessary. I would like to call them friends and am sure they are showering that gift that only comes from the spirit of Christ (No arguing). I know the only way to have the kind of success I want out of this will be to use support of others and the support of my wife. The most important support is that of the spirit that only comes through faith in the lord Jesus Christ and his Atonement which allows intercession to the Father. I love every one who is thinking of us and who has taken any role at all in action in prayer or in thought. I hope Avarie is well enough to be home soon. I love my family so much. My wife and children and am trying as best I can to keep things fairly normal at home. I have had help from family, friends and great a great supervisor at work and thanks be to them all. I am learning all the little nuances of Avaries hospital care so Jenell can go home and bring some normalcy for the other three little ones. I thank you for reading and ask That if you do only one thing it would be to keep Avarie in your prayers.

Thank You

Craig Giles

Three Days Left Until Day 29!

I want to start this post with the happiest thing that has happened to me in over a month. Around 4am Sunday morning I as awake with Avarie changing her and helping her, she had her eyes closed and then said "Mom, I love you!" She then gave me this tiny little smile, that honestly I wouldn't have known was a smile except she told me "I just smiled for you." I needed that so much. She won't let me touch her or love her at all right now, so to be able to have any connection with her is great, but to have her do that lifted my spirits. It felt like the first time your child tells you they love you, or the first time they smile when they're tiny and you know that smile was for you. It has lifted my spirit and given me strength to keep going.
They told me to plan on spending those next three days here. But day 29 is just around the corner. They broke down for me what they exactly looking for and what will happen in the different scenarios. The first senario and the one we are hoping for, is that the bone marrow biopsy shows less then 5% leukemia in her bone marrow. They will consider that remission and she will then proceed into what is called "Standard High Treatment". The high is because she is a slow responder, this is the best case scenario right now, it is the one we want. The second scenario, this one would be ok, but not the one we hope for, would be if they found more then 5% but less then 13%. The 13% is because that was the official number of leukemia still found in her marrow the last time. So as long as it has continued to go down then they will keep her on her current chemo schedule and just give her two more weeks of the same and then re-evaluate at that time. The third scenario the one we really don't want, is for them to find 13% or more leukemia in her marrow. In this case she would then move into a whole new category. She would no longer even be considered "Standard Risk", she would move into "Extremely High Risk" and we would have to plan on pretty much living in the hospital for the next 6-8 months. I am not sure what pretty much live in the hospital means exactly, but it was pretty clear we would have a permanent second home for awhile. As opposed to only coming in for treatment or when there was a problem. So these are our three options right now, not that something else couldn't come up and throw a wrench in it all, but these are the three most likely possibilities.
Today has been a slower day. Its the weekend, so there is no physical therapy or occupational therapy, its just kind of a hang out and deal with anything as it comes kind of attitude. She did get a platelet transfusion today. I was curious what platelets looked like, just incase any of you are too, they are kind of orange looking. I think I expected it to just look like blood, but no it kind of looked like watered down orange juice. Because her platelets were so low a couple of her scabs from different procedures over the weeks had started to bleed, but they seem to be scabbing up tonight. Her new platelets are doing their job.
Its amazing the stuff you learn living through this and being here. I wish it wasn't under these circumstances that I was learning all of this, but its all so fasinating and it really helps to try to learn as much as you can. It gives me a sense of some control over what is happening to my daughter. The more I learn and understand the better I am at trying to help her and make decisions for her.

Garage Sale Day

Today was the big garage sale. It was overwhelming to see the response from people. I kept hearing about peoples donations and other people spreading the word, but I had not personally seen any of it yet. I was able to get my neice, Megan to come and sit with Avarie this afternoon so I could get away for a couple of hours. When I got there I was speechless. The place was packed with stuff and people buying the stuff. I then saw a back room filled with more stuff, when I walked back there I was so overcome with emotion to see how much there was. There are not words to express the feeling I had. My family organized this entire thing. They worked until midnight almost everynight getting it all out and pricing it all. They contacted everyone they knew for donations and those people contacted people they knew. I had heard all of this, but to walk in and see the result of all of their love for my family, there just aren't words for it. My gratitude for all who worked to pull this off and all who donated and all who came to shop and support us, is eternal. I pray that you all will be blessed for your love and service towards my family. You all have my love forever. Thank you.
A quick update on Avarie, she is hanging in there today. She received her first blood transfusion today, and she actually looks pink right now. I hadn't realized how pale she really was until now. Her cheeks are even rosy. She will probably be having a platelet transfusion tomorrow. They have told me to plan on being here through Wednesday, since that is her day 29 and she continues to be a bit of a mystery to them. She is still having trouble with the formula they are trying to feed her through her feeding tube. They changed today to a formula that would be easier on her stomach, but that has not proven to be the case. So we have stopped the feeds for now and are contacting the Dr hoping to maybe try something else, or give her something to help with all the gas on her tummy. She is pretty uncomfortable right now from the gas, but she's hanging in there.