Delays and more Delays

Avarie didn't start Physical Therapy Rehab this week. She still couldn't keep anything down and the surgeons want to make sure there is not some problem. She underwent a test on Monday looking at her large intestine and colan and it came back normal, today they are doing a "small bowel follow through". It is where they make her drink some contrast and then take several x-rays of her stomach as it goes through her. If that comes back normal then we will restart feeds with her and just have to try to keep her comfortable while her body re-adjusts to food again, she has not taken anything by mouth in over 3 weeks and so its possible that her body is just not use to processing food and needs to re-adjust. The surgeons just want to be careful and make sure that we're not missing something.
Avarie has chemo this weekend and then will start rehab on Monday. She will be in rehab for 2 weeks and then has chemo again at the end of that 2 weeks. So we will be in the hospital for another 3 weeks, Yay! We love the hospital! I'm thinking about moving the whole family in and just paying them rent, its my new idea. Sounds like a good plan to me, at least we would all be together again.

Avarie doing Karaoke and Dressing up with her Nurses!

There are 3 new posts today, so keep looking down for all of the new info and pictures.

Pictures of Avarie this last Week!

Avarie being silly!























These are pictures of Avarie in the PICU loving the Easter Bunny. Once she was stable they let the Easter Bunny come in to see her, she hugged him and held his hand, it was so sweet. She doesn't remember any of it though, she was just too sick, so she loves her pictures of her and the Easter Bunny.

Avarie doing GREAT!

Avarie has been doing great this week. I just got home last night, so sorry I haven't been able to update and let everyone know how great she is doing. The swelling in her stomach is gone and she is a happy little girl again. She still has a little pain and has not been able to eat or drink yet. She tolerates water, but when we started trying to introduce food back to her she was too scared to eat anything. So we started feeding her through her tummy tube at an incredibly slow rate, but she just couldn't tolerate it and kept throwing it up. The surgeon's are going to give her a few more days to let her bowels rest and then retry food on Sunday. If she can't tolerate her feeds then they are going to do some testing to see if there was some damage done to her colan or intestines.
She is also starting inpatient rehab on Monday. That is intense physical therapy where she lives in the rehab part of the hospital and spends up to 5 hours a day just doing therapy to try to get stronger. She will do 2 weeks of rehab with chemo on the weekend. She is long overdue for her chemo, but the surgeons did not want us to do anything that would jeopardize her white blood counts when we need them to help her keep healing. She can't go too much longer with out chemo or we run the risk of her relapsing, so this next weekend is chemo no matter what.
Transplant still seems on for June, but we found out yesterday that we no longer have a donor. I am not allowed to actually know why, but the Dr hypothesized that perhaps through further testing something came up that made him unsuitable or perhaps he became sick. We're not sure why, but they are relooking for a new donor. They still have a lot to pick from and we are confident that we will relocate a suitable donor.
Big news in our family this week is that we are going to be moving back to Oregon. We will be moving to Milwaukie. We found a large home that we will be living in with Craig's parents. It has a very large downstairs with a great room and large bedroom and bathroom and laundry room. We will have the upstairs with 3 bedrooms and 2 bathrooms and a kitchen and great room. It has a great back yard that has a swing set, but I think the current tenants are going to take it with them, they offered to sell it to us for $300, it's not that great of a swing set. I would have maybe paid $75-$100. So if anyone knows of anyone that wants to get rid of a swing set we are in the market for one. My kids have never had one and it sure would be fun to have, we will totally buy it, I am not looking for someone to give us one, just hoping for a good deal.
I think we will be in Milwaukie Ward, which is great because I know quite a few people there and have met some other wonderful people in that ward recently. There is another little girl with Leukemia in that ward, I have become friends with her mom, that will be great support. It feels kind of like we're moving home. Gladstone is where Craig and I both grew up and that whole area feels so comfortable to both of us.
We have been so blessed through this process to have lived where we did when Avarie was diagnosed. That is going to be one of the hardest things about moving. We have made some great friends here and have a wonderful Ward that has been amazing through all of this. I have not always taken the help from them that I should and they figured me out and would just start showing up. They are great people who have helped to lighten my burden and have prayed and fasted for us many times. The Lord definitely directed us to this Ward for our benefit when we were looking to move up here. He knew what lay ahead of us and sent us to the right place. It will be hard to leave some of the friends that we have made here. I know its not like we're moving super far away, but I have loved having such dear friends so close.
My family all lives up here too, but I know them well enough to know I will still see them often, maybe not as often as I do now, and it won't be as close to drive, but we'll still have birthday parties, blessings and our girls night out.

Trials

Today at church our lesson was on trials. What a great lesson it was for me today. It made me realize how far I have come through this trial. I have had so many times through this that I have wondered where was the Lord, how much more could my family take and not break? Today I realized something, its ok to break. Breaking doesn't mean you can't get fixed, it just means you've done all you can and you have reached your limit. Then once you have broken that is when you truly feel the Lord, because it is Heavenly Father who fixes you. You can't glue yourself back together once you have truly broken and no matter how much your friends and family love you they can't fix you either. They don't have the right kind of glue. There is only one who can truly fix us once we have broken like that and I have felt him fixing me many times in the last 7 months and every time I become stronger and stronger as if the glue he is using is holding better each time. That doesn't mean that I won't still break and that it won't still hurt when I break, I just know now that I won't stay that way. I know Heavenly Father is there and he loves me and he loves my sweet little daughter with the broken body. Only Heavenly Father can heal her, he can use medicines to help, but honestly look at the medicines she is on. Chemo Therapy doesn't cure cancer, it poisons you and kills everything and then lets your body try to heal itself. Chemo therapy kills cancer but it is Heavenly Father that does the healing. Some people don't heal and they return home to him, others heal. Science can't predict which patients will heal and which won't. They have odds, but who will fall into those odds no one knows. It is only Heavenly Father who can save my baby, I can't, the Dr's can't, there is no cure for cancer. Today I realized it is ok to break, I like knowing that. It gives me comfort to know that when I am at my weakest and there is nothing more I can do that Heavenly Father will step in and care for me and nurse my broken spirit back to health. I am so grateful for that knowledge, I don't think I could have gotten through, no I know I couldn't have gotten through all of this on my own and it is only now when I look back that I can truly see how he has been there for me. I wish I could have seen his hand helping me. When I am at my weakest and truly broken I feel so alone. I could be in a room with 100 people and I would still feel alone, because it is not a physical feeling it is a spiritual one that we feel at our lowest. I know I will still have many breaks to go through until we reach the end of this journey, my hope now is that I will go forward and be able to recognize the Lord helping me when he does. I still have faith that he will pull my baby through this and that she will be cured from cancer. I am just so grateful for our lesson in church today and its not that we even spent that long talking on this part of trials, but it is what stood out to me and what I needed to hear and feel today.

Out of the PICU

I just got home today and wanted to finally give an update to everyone. Avarie was moved out of the PICU on Tuesday. She has had some breathing difficulties since then because her abdomen was so swollen that it was making it hard for her lungs to expand all the way, but that started getting better on Thursday. She is still in a lot of pain, but is continuing to improve. The Dr's are amazed at her, one of the surgeons commented that it was one of the worst cases of colitis he had seen that didn't require surgery, he was surprised that we were able to avoid surgery. I know that it was because of all of the prayers that were offered on her behalf and the fact that she was given a priesthood blessing that said she would avoid surgery and she did. I am so grateful for all that continue to pray for her. She still has pretty big recovery ahead of her, but she is continuing to improve a little bit everyday. Somedays are small improvements with small steps back, and somedays are larger improvements, either way there are improvements.
I just want to say one more thing, recently someone asked me if I was prepared if Avarie didn't survive all of this. And the answer is no. I am not prepared for that, what mother ever could be. I just know that her time is not over yet. I don't know if that means that she will survive all that is ahead of her, but I know that she has survived everything that she has gone through so far and boy has she survived a lot. I don't know what Heavenly Fathers plan for her is, but I know that I trust in him and he has gotten me through all of this, I know he will get me through whatever lies ahead. I was hurt when this person asked me this question, now I'm just more annoyed that someone would ask a mother that question about her baby. I don't think about Avarie dieing. I think only about tackling each issue as it comes at us, and so far she has amazed all of us. Every parent that has a child battling a serious illness thinks about the very real possibility of their child not making it through, but we can't dwell on that. If we did then how would we have the strength to push through and to help our child fight. I guess I can only speak for myself on this one, but I only linger on the thoughts of her not making it for a small moment and then that moment is over and the fight takes control. Avarie is a very sick little girl, but she is stable and getting stronger every day. She will continue to fight and so will I until the Lord says her job is done, whether that is tomorrow or 100 years from now. She has too much fight to leave this earth yet, just ask any of her Dr's or Nurses, they all know Avarie has a lot of fight in her, sometimes I have to remind her to not fight so much, she's hit a couple of nurses before, and has a tendency to yell at them. We're working on manners with her, even when she doesn't feel good she still needs to be kind. She does a lot better now, but that fight is still very much there.

PICU

I am home tonight from the PICU. Craig came and traded me, it has been a very long 2 days. She is currently stable. That means that her blood pressures have returned to normal. When I arrived at the hospital on Friday her blood pressure was 61/23. That is bad. They started administering dopamine to try to raise her blood pressure and started dumping tons of fluid in her, it took several hours to start to stabilize her blood pressure. It took until the next morning for her blood pressure to return to normal. Her heart rate during the low blood pressure time ranged from 170-199.
Craig did a pretty good job describing what was wrong with her, it is with her colan. It is called Colitis. What we think happened is that she got c-dif again. That is that really bad bacteria that lives in hospitals and lots of other places too, but it is very prevalent in hospitals. Because we just finished chemo last week the c-dif began to ravage her colan. Luckily she developed a fever on Wednesday night that caused us to go back into the hospital. It scares me to realize what would have happened had we have not been there when she went into shock. The drs think what happened is that her body began to react to the infection in her colan as if it had an infection in her entire body. An infection in the entire body is called being septic, so Avarie was in what is called Septic Shock, her body was shutting down because of this infection. The surgeons were prepared to take her to emergency surgery, they were standing by when we went for the second CT, luckily they did not see a perforation, or a hole in the colan. Only one of the worst cases of colitis they have ever seen. She is being very closely monitored right now. She had to have a catheter put in to track her urine output accurately, and she has heart monitors everywhere and an IV in each arm in addition to the one in her port. She has her pulse ox which is the little thing they wear around their finger to measure pulse and oxygenation levels, and she has her blood pressure cuff on constantly to keep monitoring her blood pressure regularly. She has wires coming from everywhere it makes it hard for her to get comfortable.
She is in a lot of pain with her stomach. It is so swollen she looks like she is 7 months pregnant. She went from having a very deep inny bellybutton to an outty and the skin is stretched so tight. It is so hard to see her like this and the Dr's think it will be a while before it gets better. She is being pumped with tons of antibiotics and has been taken off of all food and water, she is being fed through her IV's with TPN. She cries for food and water almost all day, but we don't want anything in her bowels. Her bowels need to heal.
At this point surgery is starting to look more unlikely. We are so grateful to hear that. Of course they are quick to point out that at any time things can change, her colitis has not gotten any better, but it hasn't gotten any worse either. We are encouraged by that. We think the antibiotics have stopped the growth of the colitis and now we are just waiting hoping to see things start to go down. On Friday when this happened they had said that surgery was likely, and they started to trying to prepare us and her for that possibility. It was and is a very scary thing to think about them doing because Avarie has no immune system right now. She just finished chemo last week and her immune system has been completely down. The Dr's have started giving her a shot to help it return faster. From a cancer point of view we wanted her counts to stay down longer, but from the current medical situation she is in she needs it back ASAP. So far the shots are helping much, we didn't expect her counts to start returning until this next weekend, but we are now hopeful that with the shots it will be any day now.
We had started to schedule for her bone marrow transplant. We spoke to the OHSU earlier this last week and they had set the first week of June for her transplant. We were starting to get things in order for that, but now with this transplant will be put on hold. She is just too sick and we expect this to take a while for her to get better from. She needs to be healthy(as healthy as a kid going through chemo can be) and stronger physically to survive the transplant. It is scary to think of postponing it because it means she will now enter the maintenance phase of chemo before we are able to take her to transplant. The maintenance phase of chemo is when the chemo is lessened and it is also her greatest chance of relapse. So hopefully we can get her healthy and strong before too long and get her into transplant, but we won't do it until she is ready and that may be more like the end of summer now. I don't know for sure on that, but either do the Drs they just keep telling me its a wait and see thing. The Drs can't give me really any idea of what to expect, but this is not something that happens all the time. And every person is different how they respond to things, they just have no idea how this will all go for Avarie. We just know that best case scenario we will be in the PICU until the end of this week and then moved into a regular room where we will be for several weeks. So basicly we are in for another long stay at the hospital, hopefully it won't turn into months like last time.
I am headed back up tomorrow to trade Craig out again, and I will most likely be there the rest of the week. It is just too hard for Craig, emotionally and physically. The PICU is a room with a big glass wall that has to have the curtains open the whole time so that the nurse can see Avarie at all times. A light has to be left on at all time in the room, in addition to the lights in the hallway and there is no bed for parents to sleep in, there is a recliner. I fit OK in the recliner, but I was not blessed with height. My husband on the other hand is going to have a hard time trying to sleep in a chair too small for him with someone watching him the whole night and if anyone knows Craig then they understand that the light is a big problem for him. He likes complete darkness when sleeping. I have moved him towards the light in our 10 years of marriage, but he still prefers the "darkside" and has a hard time with light at night. He is also having a very hard time dealing with seeing Avarie like that. I think moms just deal better with these things because that is our baby and we have too. Not that Avarie is not his baby too, I think it is just different for a mom. So I am off to bed tonight to try to get the best nights sleep I can. We will try to update soon.

A scary night and day

I will do my best to post as much information as possible about the current events at the hospital. I (dad) was with Avarie yesterday and all night. Her stomach pain became worse and worse. She was in constant tears and eventually we had to give her phentynal every hour to simply dull some of the pain. When we knew she had the enlarged colon we had to put her on the monitor hook up where her vitals are checked constantly to make sure there are no dangerous changes that could signal a perforation in the bowls. This made her very uncomfortable and did not help ease my deep concerns that something was very wrong with her. I was finally able to go to sleep around 4:30 in the morning and was woken up around 8 for an x-ray. She was still in constant pain and it was very hard to watch her suffer so much. we fell asleep until about 11:00 when nurses came in and where giving her a bunch of antbiotics and other medications. She had just gotten some pain medication around 11:30 and it was doing nothing to ease her suffering so we gave her some ativan in hpes it would calm her and ease her stomach. When the nurse took her blood pressure it was at an unacceptably low level. Then doctor after doctor with in minutes of each other came in poking and proding her trying to find out for themselves what to make of the situation. I was awnsering question after question wondering what was going on as doctors and specialists filled the room and lined the hallway. I knew it was not a good thing to have so many professionals in one place at one time. Finally they said we needed to get Avarie to the NICU as soon as possible as the main floor was not able to deal with such delicate situations. Avarie was not going to let me leave her side but they needed me to vacte the bed. I tried to stay as close to her as possible as we went down the halls but the urgency with which they where moving made it nearly impossible for me to hold her hand and comfort her as she likes and especially in a scary time like this. We where hurried into an open room and the flood of doctors and specialist, nurses and finally surgeons was almost to much to bear. They where in a frantic mode trying to get Avarie the different meds she would need to help with her blood pressure and heart rate. They also concluded they needed to give her platelets and blood. The ensuing minutes where chaotic. Also they said they needed to put a third IV into Avarie. This is her worst fear and I knew it needed to be done but her little veins are so hard to access it takes several minutes of poking and maneuvering the needle to get the vein the way they need to access it. She was as brave as she cold be she allways wants me to count as they do this. I hate counting beacause I have to start over so many times because it take so stinking long. It was finally in. I was trying to reach Jenell all the while and she had just left my moms after picking up Saywer. She would come to the hospital with no idea wht was going on. When she arrived I could see the tears welling in her eyes. It was so chaotic and the doctors tried there best to quell our anxietys. The surgeon that talked talked to us and I truly dont remember what he said only that surgery was a rare occurance. I left with the baby to go pick up the other kids. I got home and called Jenell she said the CAT scan they did showed no holes but the bowels where even larger than before. And Avarie was now in septic shock. She said they whre about to put a cathater in and it was very possible they would have to remove the colon. I knew somthing was wrong. I just felt it in my bones. The way she would complain about her stomach and how even the morphine and other stomach helping meds had little or no effect was very concerning. I am very great full for doctor Galaresi who I belive was inspired to make the call for the cat scan and other tests. I am greatful for all of our doctors who share one common goal but have unique ways of confronting any given situation. I am very confused about little Avarie and her intense suffering she has had to go through in her tiny little life. What a sweet and special little angel she has been to all of us have been in her life. I wonder how long her little body can sustain such brutality. I know my will may not be the Lords will but it does little to ease the frustration I feel right now. I also know there is one who suffered more tha the greatest minds can ever comprehend and for him I am forever indebted to. I pray all will be made well and the outcome in this situation and as a whole will be what is best for sweet little Avarie. I am so greatful for all of you. Your thoughts and prayer your time and geneousitys. We are in need of it all and it is a wonderfull feeling to know you are surrounded by so many wonderful family and friends as all of you are to us. I ask for your prayers to be especially focused for Avarie and her family at this very difficult time. I love you all and apologize for not being a greater part of this blog. I am everypart consumed with my sweet daughter and her happiness. So please take care and God bless you with your needs.
Craig L. Giles

Back in the Hospital

Last week when Avarie was finishing chemo and getting discharged from the hospital she was complaining of a lot of stomach pain. We really weren't sure what to make of it at the time, so the Dr's ran some tests on her stools and everything seemed to look OK, they just decided to keep an eye on it. She was still complaining so they decided to have her get an ultra sound to check things out. Her appointment was for Wednesday morning. She made it through the ultra sound, but I suspected that her blood counts might be low because she did not sleep well the night before. I have started to notice a pattern with her sleeping and can tell now when she may need a transfusion, so I took her upstairs to the Dr's office and asked them to run her counts. She ended up needing a red blood transfusion and a platelet transfusion so we spent most of Wednesday at the hospital. It takes several hours for the blood transfusions. We got home around 6pm. Craig and I were exhausted and turned in around 10, only to notice that Avarie appeared to be warm. I was praying quietly to myself why I got the thermometer that there would not be a temperature, but unforunately there was, 102.2. So we had to call the Dr on call and head off to the ER. It takes a while in the ER before they admit her because they want to check everything out and make sure there is not an immediate medical need that needs to be addressed. People with compermised immune systems can turn septic really fast, that means that things become bad really fast. So they check everything out first, everything seemed to be OK, just a fever and belly pain. We finally got up to her room a little before 2am and then had to wait for the Dr on the floor to come by and do an evaluation. We got to sleep about 4am, I AM TIRE TODAY! She has continued to complain a lot about her tummy pain and it is always in the same spot. The ultra sound did not show anything alarming that would account for her pain, so the Dr decided to do a CT. Craig is with her tonight and went to the CT with her. He called me just a little while ago and the CT showed an enlarged bowel. I don't really know what this means yet. Oh yeah she has C DIF again, and they mentioned that that could be related to the enlarged bowel. C DIF is basicly a bacteria that is very contagious and runs throughout the hopsitals, it causes lots of diahrrea. I don't fully understand all of this, I am planning on going back in the morning and I will get some more answers then. I know that they are concerned about a possible hole forming in the bowel and they are also going to keep a much closer eye on her vitals. She is continuing to run a fever and I don't know if it is related to any of this or not. I have lots of questions and not a lot of answers yet. I will hopefully have some more answers tomorrow. We are making plans to spend Easter in the hospital. Unfortunately not the first holiday that we have had to spend in the hospital. I guess its a good thing I didn't buy Easter clothes for the kids. Although I am hoping to find some good deals on some clearanced ones after Easter because Avarie loves dresses, she use to live in them and she has started wanting to put them on again, so I'm hoping to find some good sales so I can restock her closet, she deserves it after all of this.

Avarie is Officially a HERO!!!

These are pictures of Avarie playing dressup with her cousin Muirin. They had so much fun together.



After I wrote the post yesterday, I received a call from the Childrens Cancer Association. They are the main cancer group for children in the U.S. They called because our medical staff had nominated Avarie to be one of their 25 Hero's for the year 2009. Medical staff around the country nominate kids that they feel show tremendous strength and bravery through their fight with cancer. It can be any kind of cancer, because there are a lot, some of the names I can't even pronounce. Our staff nominated Avarie and she was choosen to be one of their Hero's. She will have a professional photo shoot, along with our family, and they will choose a picture of her that will go on their website and in their pamphlets for the year. Her story will be told and shared with others to try to help inspire and give strength to other families struggling with cancer. I am so proud of her to be receiving this honor. It is something that she will always be able to look back on and know that it is not just mom saying how strong she is, she is being recognized nationally for her strength and bravery. She truly is a Hero! and not just because mom says so. There will be a big unveiling of the 25 Hero's on September 13th, which is one day before her 5th Birthday. What a great birthday present. There are some other things that come along with it, but I don't know any of the details yet, they are sending the info in the mail. I am just so proud of her. It feels so validating to have her recognized in this way, and to know that other families around the country will be able to look at her and say "If she can survive all of that then so can I!" What a great gift for her to give the World, the gifts of Hope and Faith. Those truly are two of the greatest gifts there are in this world. What more can a mother want from her children. We all hope that they will find a way to make this world a better place. I am so proud to have a child that can and will rise above her challenges and inspire others and help to make someones world a better place. Avarie you are my Hero always, and now you are truly a Hero to the World!

Roid Rage, grrrrrrrrr!

Just letting everyone know that chemo is going ok for Avarie today. She was admitted yesterday and Craig decided to stay with her the whole time so that I could have a break. That has not worked out, she is hysterical for me, so I am getting ready and heading up there in a few minutes. I just can't let my baby scream for me and not be there for her. I had a nice night last night and a good morning. I was even able to make jelly today. We have been out and so I thawed some strawberries and made some freezer jam this morning. It felt so nice to do something that felt so normal. We are expecting Avarie home tomorrow.
Avarie is on steroids this week in addition to her chemo's. Steroids produce a very grumpy and angry four year old. Think roid rage in an already emotional child, not the funnest person to be around. But we'll survive it, we always survive it. That is kind of our motto right now, "just survive it!"