Surviving day to day

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

First Week Home!!!

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

HOME!!! :) :) :) :) :) :)

Avarie's ANC has been going up slowly everyday and they have been thinking that she would come home probably this next week sometime if all continued to go well. Then this morning Avarie surprised us all with an ANC of 1400 or 1.4. She had to have an ANC of 500 or .5 for two days in a row to be able to go home. With her ANC so high and by so high I don't mean its actually high, it is still a low ANC for a normal person, but for her it is amazing, Avarie is coming home tomorrow. Depending on when your reading this, because I'm posting pretty late tonight, it may be that Avarie is coming home today. I'm probably being confusing, sorry, I am just so excited and stressed at the same time. I didn't get the carpets cleaned or the house disinfected. So I have been setting it all up today, the carpet cleaner is coming first thing in the morning and help is coming to help come and disinfect. I am so grateful to everyone willing to come at the last minute like this to make this all possible.
Avarie has just gone through transplant with out any problems, besides the early bacteria infection and line problems, but as far as transplants go this has been one of the smoothest ever. (KNOCK ON WOOD!!) We still have a long way to go, but so far everything is looking amazing. We will probably do the big test at the end of this next week to determine which blood she has. By big test I mean important, not that its scary or invasive. Its just a lab draw, I believe. They just test her blood to see is it her blood or the donors. We hope for the donors. It should be pretty easy to determine, they just look for either XX or XY blood cells. Boy or girl cells. Its possible there could be a mix, well a lot of things are possible. I am just so grateful to have gotten this far and had it go smoothly. Avarie has never had anything go smoothly in this whole process. Everything has been a struggle and an "interesting case". It is nice to finally have things go our way. I know with out a doubt it is because of all the prayers that are being offered on her behalf. She is definitely one loved little girl by so many. Thank you all for your prayers, I know they have been heard and now we can all see the result of our prayers. Please don't stop yet though, we still have a little further to go, but we're almost there. Its like the finish line is just up ahead and if I just reach my hand a little further I'll be there. It feels so close, I just hope I'm not getting my hopes up too high. I should say I am cautiously optimistic and I haven't felt this optimistic in a long time. It feels great! It will feel even better when this is all behind us.
So if all goes well, Avarie will be coming home Today(because its after midnight when I'm finishing this)! Not sure what time yet, but HURRAY!!!

Whats an ANC and why yes she has a small one now :) :) :)

Today Avarie offically has an ANC. An ANC you ask? What is that? For all you who have not graduated medical school like myself, haha, an ANC stands for Absolute Neutrophil Count. Are you still confused, of course, even those who follow us really close where asking me today what that was and what it meant. Its ok, I honestly don't expect everyone to remember all of this, its just that I have to so I do. Neutrophil's are the part of your blood that are basicly your immune fighters. So for her to have an ANC means that she is starting to regrow her immune system. Her ANC is only .1 which is really really low for a normal person. But for someone who did not have an immune system it is a good start. Avarie has to have an ANC of .5 or 500 for three days in a row to be able to go home. Yes I said home. The word was actually brought up today, I can't believe it either. There is a chance that she may be going home in the near future. I hate that I just wrote that because I had to find some wood and knock on it really really hard. When they said that this morning I asked about Graft vs. Host, because so far Avarie has been doing great, only a mild skin rash that doesn't bother her at all, it just kind of comes and goes. I was thinking maybe we were going to be in the clear and we were getting off easy, but they burst my bubble on that and set me straight. I guess Graft vs. Host shows up more 1-3 months post transplant, hence the 100 days of intense follow up. It takes a while for the bone marrow to regrow completely and fully be able to attack her body, if its going to. But they did say that if she goes the first month with limited Graft vs. Host, it is possible that she will not get it severely. Usually the kids that get it the worst start during the first month. The Dr was quick to laugh and remind me though that since that is the norm, Avarie will probably do the opposite. She laughed and said that Avarie just hasn't read the book on how cancer and chemo is suppose to go and she's just has not followed the rules very well. I commented that perhaps that means she didn't read the part about getting Graft vs. Host and just won't get it. She thought I was really funny, but thought it was maybe possible, but she really doesn't expect that. She expects we will still see some Graft vs. Host to come.
When I came back to the hospital last night, I came back to a very shiny head and a little girl who is so full of energy she was sitting in the window sill and bouncing. I love seeing her feel so well, I can't wait to put this all behind us and just live normal again. I don't even know what normal is anymore, but I sure wish to relearn how to do it. I think I remember that I liked it.

Pictures and Video's from the Hospital

Great Visits Today and Happy Birthday CARTER!

Today has been a very good day for Avarie. She was visited by some very wonderful people. Three of her nurses from Emanuel, her Childlife person from Emanuel and our Case Manager from Emanuel. Can I just say that I love Emanuel and all the people there. What amazing people to have seen my post yesterday that Avarie needed visitors and they all came running. We were so lucky to have ended up with the best medical care in the world when we ended up there. I am learning to like Doernbecher, but my heart is totally at Emanuel and always will be. They saved my baby's life more then once and not only that they truly love my daughter. I love them all so much for that, I love them too because they have all become such good friends to me and my family. Oh and not only did we get these visits today, about two weeks ago another one of Avarie's fav nurses from Emanuel came with her husband in tow and Avarie's Physcial Therapist made a special visit up here to her too. Can I just tell you what amazing people those Emanuel people are. Can you tell I love them, because if you couldn't let me just say it one more time, Emanuel Nurses and Dr's and entire Staff the Giles Family loves you all.
Turning my attention now to Avarie, which that is the part most of you probably care the most about not about my eternal love for Emanuel. She is doing great. Her rash kind of gets worse then gets better sometimes in just a matter of minutes or hours. Its odd, but I guess normal. It never bothers her so that is great. Really nothing is bothering her, except her new boots that she has to sleep with at night. It took her almost 2 hours last night to go to sleep, they're actually really soft and padded on the inside, but they're big and clunky. She has to sleep in them to try to stretch out her hamstrings so that when she tries to walk she's not walking on her toes. Although I suspect she would gladly walk on her toes the rest of her life if she could, she thinks she looks like a ballerina when she does it. She went to sleep better to night so thats good.
Her counts are still a bit of a mystery. I tried to get the Dr to speculate today on them, but he said too much speculation hurts your head, I explained not knowing and not having any ideas hurts my head. He thought I was funny, I thought he was annoying. Oh well! I realized I wasn't going to get any answers, so I am left to wait. Although I am feeling much more postive about it all. The rash continuing definitely gives us hope. I can't imagine any other situation where someone would actually get excited over a rash and really there just aren't any other situations, but this rash has me hopeful and mildly excited. I promise to not get to excited over something attacking my child.
Thanks to all of you who continue to support us emotionally and physcially with meals and finances. I hate even admitting that we are getting help with that, its a pride thing, but we are amazed and grateful for everything.
One last thing, Happy Birthday today to my sweet little, excuse me, BIG man CARTER!!!! He is 7 yeas old today and mommy didn't even get to see him. But Daddy took him and two friends to Wunderland and he had his friends stay the night. I think he was OK with it all, we'll have a big family party for him this next week.

Day 12 Graft vs Host starting

I've been trying to download a cute little video of Avarie, but I can't figure out how to do it from this hospital computer, oh well I'll download when I head home in a couple of days.
Avarie is doing really well. She is bored, but she's hanging in there. Her blood counts have been bouncing all around, but they have been staying really low, so we are feeling better about the transplant. Her white count will go up to .5 one day and then back to .2 the next, but her platelets continue to climb a little each day. So I'm not really sure what to make of it, but last night we got our first Good/Bad news. Avarie started getting a rash. Its good news because it means that her new marrow is starting to grow, but the bad news is that it is the start of Graft vs. Host. Its possible that the Graft vs. Host won't get too bad, we're all hoping that. Today the rash has gotten a little worse, but its not bothering her at all, its just kind of there. So we just sit and wait and keep and eye on it and here.
Other news, the fuzzy head Avarie had is all falling out and man is it falling out fast. We noticed hair on her pillow yesterday afternoon, but today if you put your hand up there it comes down covered in hair. It just falls out and it is everywhere, except her head. Her little bit of hair that she had is looking really thin and sad. We just made it a joke and that is the video that I was trying to post. She puts her hand up there and keeps pulling her hair out and laughing. I am so glad that she finds it funny and knows that it will grow back. She says she wants it to grow back like Rupunzel.
Avarie can't have any kid visitors, but she would love any adult visitors that want to come play with her. Obviously if she already knows you it would be a much more fun visit for her, so to anyone reading this that knows Avarie and might have a free hour or so, she would love people to come play Candyland with her or build a puzzle or play pretend. Mom and Dad are kind of burned out and she is getting a little stir crazy. But please if you have any sick symptoms or sickness around you please just wait, but if your healthy and up for a challenge from a little girl who never loses at Candyland and Chutes and Ladders she would love to challenge you. Or if you have any other fun new games Avarie would love to play against you, Mom and Dad would appreciate the break from constant entertainment. Thanks everyone for your continued prayers and support.

Day 10 Post Transplant

The weekend went by with little to report. Today though we have had a few possible changes. Avarie's blood counts have started to come back. It could be a fluke, so we will have to watch the next few days to see for sure. Unfortunately it is possible a bad thing to see her counts coming back already. Really we should not see anything for several more days, but over the weekend her counts seemed to stabalize and then today they have started to go up a little. Like her platelets went from 23 to 34 and her white count went from .3 to .5. Its not a lot but she should not be producing any blood products, her bone marrow should not be able to do that quite yet. Its possible that it all just engrafted really fast, but there are also a whole bunch of other possibilities. Like her bone marrow might be growing back and it so all of this would have been for nothing. We would have to do it all over again. Or its possible that her marrow and the donor marrow will both regrow and then there will be a war going on inside her marrow with them both fighting eachother, but her marrow will be stronger and most likely win. Either one of those cases is frustrating and not what we want to happen. It is possible that the new marrow is engrafting, but I'm not so sure and the Dr's just aren't sure either. They won't commit or say too much either way. They just keep saying we'll have to just wait and see. The protocol for her is to do a test at day 28 and see which marrow is actually growing, thats 2 weeks away. But if her counts start coming back really strongly I suspect they may do the test sooner. So until then we will just be watching her counts each day very closely and we will just have to take this on a day by day basis. I just wish I could get the Dr's to be a little more straight with me and not just give me the run around with the we just don't know. I know that they don't know, but tell me what you think might be happening. They are supposedly experts in this, I want to know what they think is happening.

Had some thoughts up here at O.H.S.U

This is just boring old Craig here to report. Well there is no news up here on the hill. Avarie is doing very good. It is day 7 and we are inching closer to a date when we may know some results. I was writing in a journal today which is an extreme rarity. I seem to write once or twice a year if lucky. I just want to share some of my thoughts as expressed in the journal. I want to say how blessed we have been as a family. Avarie's always come out for the better even in the scariest of circumstances. And our needs have always been met both temporal and spiritual. The people who have invested great time and emotional energy into Avarie and our family. Be it through fundraising, blankets or hats. Gifts of all kinds. Other special hand made heart felt items. Bringing over meals helping with house work or moving. And family helping with the kids and everything else. And the amazing amount of thoughts and prayers that without question have helped shape this into a bearable and strengthening experience. I feel very unworthy of the pure love and support that is being shown to Avarie and the family. Yet am forever grateful. I really can not say thank you enough. My way of saying thank you is by praying for all of your needs to be met. And that you also will experience true happiness and joy. For that is something amazing people like all of you deserve.

Thank you all

Avarie & Craig & family

Happy Fourth of July!

Avarie is doing great. The Drs came in today and are really impressed with how well she is doing. She is still tolerating food and most kids have stopped eating and are on TPN by now, she also still has no mouth soars like we thought she would by now. She is happy and playing and is just doing really well. We also had one of our Dr's from Emanuel come and visit us today, we love seeing familiar faces that we know and trust. Its not that we don't trust Doernbecher Drs, its just that you don't get to know Dr's here the same way you do at Emanuel. So we were very excited for a visit from Dr. Faith (thats what we call her).
I came home tonight and Craig is spending the Fourth up with Avarie. I am taking the other three kids to the beach for the weekend. My parents have a beach house that they have had since I was a kid, but they have just sold it and this will be our last chance to go. So our entire family, that is still around, will be going and spending the Fourth down at the beach together. Addisen asked me tonight how many people were going to be there and we counted 31. Its funny but that is only part of our family we are still missing 16 other family members and this is all just my immediate family. It will be busy and crazy, but hopefully a lot of fun, it will definitely be a nice break away from the hospital.
Avarie, unfortunately will not be able to watch any fireworks. She is not allowed to leave her room which is too bad because there is an amazing view from out in the main hallway over the Willamette River. Avarie is up on the 10th floor and I think they may be able to see fireworks from there. Luckily she is so young she doesn't really know what she's missing. She's just excited to wear her 4th of July shirt.
We had an amazing friend stop by the hospital today and bring Avarie some great gifts and brought our family some much needed help. The funny thing is, is that it is a friend that I didn't even know that well from High School. But that didn't stop her, she heard there was a need and she stepped in and helped. Through out this whole experience I have been amazed at the people who I don't even know that well and people that I do know very well that have come from all around to help us. Thank you will never be enough to those people. They have helped pick our family up at a time when we are just incapable of doing it for ourselves. Its really sad how fast life can spin out of control and if it wasn't for the amazing friends, family and friends of friends who have stepped up to help us, I just don't know where we would be. Thank you just seems so little, but THANK YOU! To everyone who has helped a little or a lot, and Thank you for all of your prayers and kind thoughts and words they have helped us through some very tough times. I wish all the tough times were behind us, but I know we still have a ways to go.
I will be out of town for the weekend, so there will only be updates on the blog if something happens or if Craig decides he wants to post something. Sometimes he surprises me and posts the most amazing things on here. He might just do it, because I know he is going to be so bored at the hospital until Monday when I switch him back out.
I just remembered, but last 4th of July was when our journey actually started. It was that night one year ago that she began complaining of pain in her sternum and we took her into the emergency room the next night. The Drs thought she had a bruised sternum and thought she must have fallen on something during fireworks. But Craig and I knew that she hadn't. For her to have hurt herself that badly, and she was in so much pain she wouldn't move for days, we would have seen something, or she would have come crying to us if she had fallen. That is the night that this story actually began. I can't believe that was a year ago. What a year!

Pictures and quick updates

Avarie has the best luck at games. She wins almost every time and we don't even let her or make it easier, she is just really lucky, especially at Candyland. She is playing in these pics against Grandpa Foushee and she beat him every time. Grandpa had never played Candyland before, how you can have 8 kids and never have played Candyland! Guess he was to busy trying to feed us. It couldn't have been cheap raising 8 kids, so I'll give him a break.
The other pictures are of the transplant. The bag is her stem cells. It was a very small bag and the second pictures is of her asleep with the cells going in through her PIC in her arm. You can see the cords above her head going down into her arm. That is about as exciting as the transplant got, but I wanted everyone to be able to see.
Everything is still going really well. She still has the cough, but it hasn't gotten to bad. She was a little wheezy this morning, but seems fine today. Just keeping an eye on it. We don't really expect any changes for at least 3-7 more days, somewhere in that range. We're just hanging out and doing lots of puzzles and games and watching a lot of movies and definitely lots of Polly Pockets.