Day 4 Post Transplant

Avarie is still coughing, but the Dr's don't seem to be too concerned. If they are they are not showing it to us or saying anything really about it. Her lungs are still clear, and there is nothing else going on except for the cough. So I am going to try not to worry, but honestly I am exhausted today. I slept a little last night, but not much my mind just kept waiting for the phone to ring and Craig to on the other end telling me something bad. Luckily it never happened, I just wish I could go back and resleep last night. I know we've been doing this for a long time and I know that it is ok to be tired and stressed, but honestly I feel like a nervous wreck inside right now. I just want to hurry and get through the next couple of weeks and know what we're going to be up against. The not knowing and the worrying about what will be and how bad will it be is horrible. We know that we are going to have problems, that is just a given, but not knowing how bad or when it will start is frustrating and mentally exhausting. I think I'm due for a blessing, maybe I'll ask for one tonight. My mind could definitely use a little peace tonight.

Day 3 - After Transplant

This weekend has been pretty uneventful, so sorry I haven't posted. We've just been kind of hanging out. Avarie has been doing pretty well. We may have one complication arising, but I'm trying not to overreact to it, and I'm partly trying to deny it so that I don't get too worked up over it. Avarie tested positive for the Rhino Virus, which is just the common cold, this last week. She hadn't developed any symptoms so we kind of thought we were in the clear. Then the other day we noticed that she was coughing just a little. It was just a small dry cough that only happened a couple of times that day, but since then it has been getting a little worse each day. Today was the first day though that we could say, yes she definitely has a cough. So far her lungs are clear and she has no fevers, but with no immune system this could turn really serious really fast. A common cold for us our body will fight off and so we may get a bad cold or even congested, but Avarie has no immune system to keep it under control or to fight it. It could spread and become really serious. I am trying to stay optimistic and like I said I am trying to not get too worked up about it. Just take it day by day thats all we can do. We'll see what tomorrow brings. Craig traded me out tonight so that I could have a small break away from the hospital. But I don't think I am going to be able to stay away if I get a call tomorrow that she has gotten worse. So tonight I am praying for a miracle. Lungs is definitely one of those organs you pray you don't have a problem with. I will update as soon as I can. Just know that for now her lungs are clear, her oxygenation level is 100-98%, that is great and she has no fevers.

Day 1 After Transplant!

I am so grateful that there is nothing new to report. I don't often get to write that, but we are just hanging out and waiting for Princess Protection Program to be on tonight. That is a new show that is going to be on Disney tonight. Avarie has been waiting months to see it and it is finally on tonight, oh the excitement. She is doing great and not having any new problems or concerns. It is all just a big waiting game and hoping that it can all be just as boring as it is now. Unfortunately we know that it will not stay quite so boring, she will have some Graft vs. Host problems, its just a matter of how much and for how long. The problem is not her body rejecting the new marrow, that can happen, but the bigger problem is her new marrow actually rejecting her body. Since the immune fighters are made by the bone marrow, when her new bone marrow grows in it won't recognize her body and will to some degree fight it. Its just a matter of how much and for how long. Bone marrow is one of the few things that can be transplanted that your body can actually accept and vice versa. Unfortunately we had to use an unrelated donor which means she has a much greater chance of having this problem. When its related, meaning a sibling, then so much about the marrow is the same as before, so many of the DNA markers, its not so different and so the marrow and body respond to each other better. So we know we will have a problem, we're just hoping its minimal and that her new marrow will accept her body quickly. Some kids end up with Graft vs. Host Disease where their marrow never accepts their body and they have to be on immune suppressants their whole life, others its just for a short time. She will be on them for at least the next 6 months and then if her body is responding well she will be slowly weaned off of them.
I took a few picture last night of the transplant, they're not that exciting, but I wanted them to be able to document such a huge thing in here life. I will hopefully get them posted soon. Thank you all for your prayers, they were definitely answered last night. Everything went perfectly. Please keep up the prayers we have a long long road ahead of us and we are definitely going to need them.

Transplant DONE! Now We Wait!

Its 1am and transplant is done. It actually only lasted about 30 minutes and went great. There were no problems, she slept through the whole thing and now we just wait and see how it goes. I'll update tomorrow with any new info. Hooray!!!!!!! We're on our way to our CURE!

Day 0 TRANSPLANT DAY!

Today is the DAY! The plane is actually due in at 9pm tonight and we expect to start the infusion around 11pm. We know a little better what to expect tonight. Her nurse will stay in here the entire time of the infusion taking her blood pressure every 5 minutes and monitoring all of her vitals. Sometimes kids can have a reaction to the cells, just like an allergic reaction with hives or rashes. The most common thing they see is blood pressure issues, which is why the nurse will stay in here the whole time monitoring. Sometimes their pressure can go really high requiring medication and sometimes it can drop really low requiring medication or a bolus of fluids. A bolus of fluids means they hook her up to an IV of fluids and push it in really fast. It increases the fluids and pushes more fluids through your heart making it beat harder and faster. I'm sure a Nurse or Dr could explain that with better detail, but that is what it basically does.
If she is going to have any thing more severe it won't really happen until days or weeks later. That is why the following weeks will be the most critical. Tonight should be pretty uneventful, but I will be taking pictures of the whole thing to post. It probably won't get posted for several days because I can't upload pictures here from the hospital, but I will either send the camera home with Craig when he comes to visit or when I am at home next.
Her blood counts are finally where we expected them. Her immune system is gone. We've been really low like this before with chemo, but this time there are no rescue drugs to bring it back.
The nurse and I were just talking and she brought up an interesting thing. Avarie will have two different types of DNA now. Her blood will have one kind of DNA showing she is a man, and her skin and body will have her DNA. I thought that was funny, she could get away with a life of crime if she left blood behind. They would think they were looking for a man. The blood DNA won't effect anything else in her. She won't have problems with her body making male horomones or anything like that. They all operate separately. It will just be the DNA of her blood. Its strange but it feels like she is about to become a new person. I know she's not, just her bone marrow will be different, but it feels like she will. I wonder if it will have any affect on who she is, personality wise. I've heard those transplant stories about things like that, but who knows if they're real or not. Hopefully the man she's getting the marrow from was a good and kind man, just in case. Well he would have to be to have paid to be on the registry and then to have gone through all that he went through to donate anonymously to someone he has never met and may never meet. That takes a special person, especially for a guy at the age of 23. Not that young men are not kind and special people, its just not something that most 23 year old men would stop and think to do, to be on the registry and then to inconvenience themself and go through this process. He must be a very good man and the gratitude that I feel for him cannot be put into words. He is doing something that none of us can do, he is saving my babies life. He is a Superhero, he is our Superhero and I will love him and have a place in my heart for him for eternity.
We are going to be having a bone marrow drive in Avarie's name, we don't have a date set yet things are a little to crazy to try to organize it right now, but please everyone consider coming and being put on it. It only takes a cheek swab to get on. It costs money, around $50, unless we can find a corporation to sponsor it. Like maybe a News Station, it would be great publicity for them. But please everyone have that thought in the back of your mind to be put on it. You could be the answer to someone other childs prayers, just like this man is the answer to ours. We have met several children who don't have any matches and can't have a transplant and others who are having to have a less then perfect match, which will definitely be filled with compliations. The more people in the registry the more chances there are to save these children.
I will post again in the morning to let you all know how its gone, unless anything exciting happens between now and then. Please remember us in your thoughts and prayers today and tonight.

Craig needs to speak.

Just real quick about my old employer. I was treated very well while I was there and they went above and beyond to accommodate me and the situation. I am so grateful to all those there who where and still are supportive through thought or prayer there. I may have my own feeling as to why I was let go but that is really a mute point now. I am so grateful to all of you out there who make this experience manageable. Wether it has been through your prayers or your thoughts. Or through donations of money, time and energy. I feel so blessed every day for my life. For my wonderful wife and amazing children. For my totally awesome family both blood and extended. I owe all I have to my father in heaven who has given me every gift I have. Even my breath of life. I know that all will be well tomorrow and ask everyone to rest at ease. I thank you all.
Love
Craig L. Giles

Day (-1) Almost Time

The first two pictures are pictures from our trip to Enchanted Forest before we went in for transplant. The painting is a painting that Avarie did while at Emanuel. She did it in Art Therapy and I love it. It took us a while to see the painting for what it was, I just saw colors swirled at first and then one time the painting was turned this way and I was standing back and it just hit me. The Dark creature luring behind the beautiful colors reaching out to get it and a little bit of the black has mixed in with the beautiful colors, It is amazing that she created this. We just gave her finger paints and a giant canvas and she did this.
The last picture is her riding a tricycle at Doernbecher a couple of nights ago. They let the transplant kids go out of their rooms in the evening when there are not so many people as long as they wear a mask and scrub their hands after.
Tomorrow is transplant. We were unsure what time it would be happening, we didn't know what time the plane arrives with her stem cells. We found out this morning that it will be arriving at 11:30 pm tomorrow night. So by the time the plane arrives and they get the cells to the hospital and do everything it will probably happen really early Friday morning. She will most likely sleep through the whole thing, but I will be taking pictures. Even though it is just a little bag of blood basically, I want to document it. We have been waiting for this for so long and done so much to get here, I will not let it pass with out marking it.
Craig and I will be trading out tomorrow because I want to be there for the transplant. We were both planning to be there, but finding out that its going to be so early in the morning and Craig is starting to go stir crazy,I think he has decided to come home instead of us both trying to sleep there.
Its really going to be pretty uneventful, and anti climatic, but I still want to be there. Just in case anyone missed previous posts, I'll quickly re-explain how the transplant works. The donor: a healthy, 23 year old man from some where in this world is donating stem cells to Avarie. We had the option to take actual marrow, but the stem cells work just as well and they only take actual marrow now in certain circumstances. The donor has been taking medication over this last week to boost his stem cell production and then he donates his blood and they have a way to filter out his stem cells from the other parts of his blood and they transport it to us. We then hook up the small bag of blood to Avarie's Buddy and it goes in and the transplant is done. Then we have to wait for 2 weeks for the stem cells to find their way into her bones where your bone marrow lives and for it to start to regrow. The greatest chance of complications comes during this time and the weeks following. So far even though we got off to a rocky start Avarie is doing really well, she has tolerated the chemo's great and we are hopeful that the rest of this transplant can be as anti climatic as the actual transplant is.

Day (-2) - Feeling Good

Yesterday went much better, Avarie did not get sick. When we first started the medicine her blood pressure went low and we had to track that a little closer then we normally would have, but it bounced back and she tolerated the medicines fine. Craig says she slept well, not that he did but its really hard to sleep at the hospital. At Emanuel we had been there so long we started to sleep pretty well, it will just take us some time to adjust to sleeping at Doernbecher. I don't know her counts yet, but the Dr's said that we will move forward with transplant even if she still has some counts. I am a little confused by this, but I think its maybe because those cells are dieing but then I don't understand why wouldn't the new cells that we're giving her die then too. I'm not sure about all of this, I need to ask some more questions from the Doc's. So I'll update that when I understand it. Otherwise things are going OK. Avarie is playing and in a pretty good mood. She was definitely excited to see Daddy yesterday and be able to play with him.

We got word finally on Craig's unemployment, it was denied. GRRRR! They said because he was let go because he had 5 absences in a 90 day period. Your only allowed 3, we already knew that that is what the company said when they let him go, but we missed those days because that was when Avarie first got really sick and we were in the hospital for over 2 months. When Craig had called in to work they had told him not to worry about it to take as much time as he needed, they were incredibly nice about it and made him feel OK about taking the time off. Then he injured his back twice and that is when they let him go. We know that is the real reason, which I understand his back was a liability, and that is why we wanted to move to a different position there that wouldn't require any lifting, but instead they just found a reason to get rid of him. His absences where in the first 90 days he was there, but that had expired by almost 2 months when they then let him go and he only had 1 absence during that time. There were no warnings, nothing from them. It just doesn't seem fair that a company can do that. So now because of the reason that they gave for his dismissal we now can't get unemployment and the Family Medical Leave Act doesn't apply because he would have had to have been there for over a year and he was hired the week Avarie was diagnosed. So Mallard Landing in Battle Ground Washington, Shame On YOU! That is the best I can do, now we just have to accept it and move on.

Day -3 I have been tracking the days wrong!

We actually tack the days by doing a count down to the actual transplant and then transplant day is day 0 and the following day is Day 1. So for the next few days I will be counting down in my headings instead of up. Sorry for any confusion.
So there will probably be another post later tonight. Yesterday ended up being a pretty eventful day, darn. The t-cell killer medicine that she got ended up being horrible. She reacted to it. She spiked a 103 degree fever and began vomiting a lot. She turned grey, and I mean really grey. She wanted me to lay by her the entire day, but I wasn't allowed to touch her or move. It was a really long day. The medicine was suppose to go over 8 hours, but we ended up slowing it down so it went over 10 hours. By slowing it down it helped her body to stop reacting so much to it. It helped and by evening she was feeling great. She was even allowed to put on a mask and go ride a tricycle through the hallways. She was having a blast and riding so fast, honestly I had to walk fast to keep up. She was having a blast and then she got tired. We went and laid down and the fever came back and upset tummy. I guess she can react to the med for 48 hours after, because this morning she has started again, but this time she has a red blotchy rash too and we're just getting ready to start her next dose. Its going to be a very long couple of days, but she has to get the medicine.
The other weird thing going on, is her counts are actually going up. We expected her to be neutropenic today, which means no immune system, but she actually has really good numbers today. They have been slowly going up the last few days, supposedly that can happen, but today is a huge jump up in her numbers. Her white count and her ANC are actually on the high end of normal and above normal. I'm waiting for the Doc to come in and explain, the nurse hypothesized that the meds are just pulling all the remaining neutrophils (those are the immune blood cells) out of the her body into her blood stream. Like her body is doing a last ditch effort to save itself. Then we'll see a huge plunge down, but I have to say I'm not too sure about that. We need her counts to be 0 and her bone marrow to be gone so that we can replace it with the new cells on Thursday, I'm feeling a little nervous about what is going on with her numbers, but hopefully the Doc will be in soon and give us a good explanation.
So like I said I will probably be reposting later today or tonight with more info, unless she is just too sick to get away from her. Craig and I are suppose to be trading out today, but he was worried that he was starting to feel a little sick last night, so we'll see. I don't want to take any chance with her. I have finally turned the corner and am feeling well, I've had a few lingering symptoms from the cold I had last week. But I am feeling great today.

Day 7 - Happy Father's Day

Avarie is doing great today. The lines are all out and she is doing well. There is nothing amazing to report, we are just waiting for her counts to drop. The only big thing happening today is she is getting a special med that kills t-cells. Its an immune suppressant drug to try to damage her bone marrow a little more. We're trying to damage and kill the marrow as much as possible without damaging her.
Thursday will be the next big day as long as she doesn't have anything unexpected come up. Thursday is the day the stem cells come and she is actually given the transplant.
So for our post today Avarie is going to write a little note to her Daddy, since she can't be with him today.

Dear Daddy,
Happy Father's Day, I love you Daddy. I wanna come home and play with you Daddy and color with you. You're the best daddy in whole world because you make me happy. My favorite thing is rock band Daddy, you need a new microphone so I can sing with you and don't play too loud. I love you Daddy Happy Father's Day.
Love, Avarie

Day-5 Surgery and now surgery again

Today is a long day. Avarie had her Hickman out this morning and they were successful in putting in a double lumen PIC in her arm. They put it in her right arm per my request because she sucks her left finger and she does not like to bend the arm all the way up when the PIC is in it. They place the pick on the inside of the arm just above the elbow crease. She seems OK with it.
Then to make the day longer they have also decided to remove her port. Her port is the one she has had since last October that has been a headache for us almost the whole time. Since she has had an infection and the port is a piece of plastic that has been in her body for so long they want to get it out. If bacteria is going to grow again it is most likely going to grow around it, so lets take it out while we can. Of course that means that the Mac and Cheese that she ate right after her morning surgery was a mistake, we shouldn't have eaten. That was around 10am and now we have had to wait until 4pm for surgery that we are not even sure yet they will fit in. She has had to not eat ever since then. She's handling it well, but when she is like that I don't like to eat in front of her and she doesn't let us leave the room, but for a few minutes here or there so I try not to eat also, big mistake today. My head was not liking that and I started to get a massive headache. Avarie was so sweet she offered to rub my head and then when I told her it was because I hadn't eaten she said "Mommy you can go eat, just hurry!" I love her so much, she is so patiently waiting and finger painting right now as I type this. Never mind I just looked at her and she is now making a huge mess. I'll update more later I have paint to clean up all over.

Day - 4 GRRRRRRR!!!!

Today the Dr's have decided to pull out Avarie's Hickman. That is Avarie's new buddy that we were so excited to get. They believe it is the source of this bacterial infection. So tomorrow morning we have surgery. Her counts are getting lower every day so they want to do it as soon as possible. They will put a PIC in her arm, which is a step up from an IV and a step down from her Hickman. It is not the best solution, but the best we can do in the current situation. We are hoping to be able to get a double lumen PIC, but last time she had a PIC we were only able to get a single in. We're not sure what we will do if we are only able to get a single in. I guess they may end up putting in two PICs, one into each arm because we have to have double access to her veins and her PORT is just too unpredictible to try to trust it. Can I just say I hate all of this. I am so frustrated by it all I want to scream or cry or just be angry with someone. I knew that we would have some complications during transplant, there are always problems, but I just didn't expect it all from the beginning. I didn't expect there to be problems like this. At least she is tolerating her chemo's well and is in a good mood and so far not too sick to her stomach. I am grateful that she is tolerating transplant so well so far, of course we are just at the beginning of that part too, but I just wish we weren't having to lose her life line that we were so excited to get and to be facing surgery at such a vulnerable time. Oh well, what are we going to do, its not like we can say no thank you we want to stop all of this right now or no leave her line in that could jeopardize her life. Sorry, I'm venting a little. I sure miss our Dr's and Nurses from Emanuel. Not that the Dr's and Nurses here aren't wonderful, its just that we knew the people there so well and we were so comfortable with them. There is a certain trust and comfort that you develope and so when something goes wrong and they come in and explain things to you, you already have trust in them. It makes it easier to get through these things when you know the hands that your baby is in. I'm sure by the end of this we will know and trust the hands we are in, but for now I miss our friends and wish that they could be here to see us through this time.
I came and traded Craig spots today. I wasn't going to until Saturday, but Craig was starting to feel stuffy and since Avarie has not gotten this cold yet, we want to try to keep her away from it. I am on the mends, not 100% but definitely getting better, so I was the better choice to be here for now. I also wanted to be here with all that is going on. Craig has been doing a wonderful job, but when things start getting medically complicated I usually step in. I track her medical stuff and remember it, I have been blessed that way. So I deal with the medical stuff more and Craig gets to be the fun loving daddy and care taker. He is wonderful with her and that gives me so much comfort right now. I am grateful that when I am feeling weak right now he can be the strong one.
We'll update more tomorrow after surgery and let you all know how she is doing.

Day - 3

Everything is actually going really well today. Avarie got sick a little this morning, but is actually feeling really well. She called me on the phone this evening and talked with me. She is so cute and her voice sounded so good. I had expected her to be sicker today because she was having a double dose of chemo today, but she is doing great. Her counts are continuing to go down and she will have her first blood transfusion tomorrow morning. I don't mean her first ever, just her first through this process. In the next few days we will have completely destroyed her bone marrow and your bone marrow is what makes your blood, so she will not be able to make her own blood, so she will be getting a lot of transfusions of both red blood cells and platelets until her new marrow starts to work.
Craig couldn't remember exactly what the Dr's said about her bacterial infection today, but there was something new with it so they were upping her antibiotic dose. He's going to put me on the phone with him tomorrow when the Dr's come around so I can hear and ask questions.
I am slowly feeling a little better, of course I thought I was feeling better the other day too and then got sicker. This is a miserable cold to get. Sawyer and I both have it. We keep waking up with our eyes glued shut in the mornings. Very annoying! I am sorry to several of his little cousins that he has now given it to while he was up staying with Grandma so we could check Avarie in for transplant. This is definitely not one of the easier colds to deal with. It is a miracle that Avarie didn't get it, and I mean truly a miracle. She was home all week, with a sister and brother coughing and stuffy noses. Then mom was at the hospital with her stuck in the one room trying desperately not to breath on her. It is truly a miracle that she was spared this. I don't know what would have happened if she would have gotten it. The cold definitely causes lung congestion and coughs, that could have been very bad for Avarie. She will not have any immune system for at least the next month and for several months after that she will have an extremely weak immune system. Something like this could have been really really bad for her. I am so grateful to our Father in Heaven for protecting her from this. It seems like something so simple to be grateful for, that your child didn't get a cold, but I am sooooooo grateful. I hope all those "o's" show how grateful. Its hard to show emotion in your words sometimes.
Thank you all for your thoughts and prayers, please keep them coming our road is definitely going to be a long one.

Day 2 - Transplant

Avarie hasn't gotten sick since yesterday. I think it was the chemo she had yesterday morning that made her sick. She seems to be doing OK today, not eating a lot, but a little bit. Her infection is not the cold that we all have had, so far she has not gotten that and I am trying desperately to scrub my hands and sanitize and not breath on her at all. So far so good, Craig is trading me out this afternoon. I had stayed with her because we thought she had the cold so it didn't matter. Now we realize she doesn't and so I am trying to get out of here before I infect her. Her counts are starting to drop. They are still in a good range, but they are half of what they were yesterday.
She has tested positive for two bacterias. Not sure yet which bacterias they are exactly, but we know that they are both Gram A bacterias. One is a Gram A positive and one is a Gram A negative. I don't exactly know what that means yet. It is just a classification and which bacterias they are exactly we should find out later today or tomorrow morning at the latest. They are not anything that someone exposed her to. They think they are bacterias that just naturally reside in our bodies and hers has just turned into an infection. That's common in immune suppressed people. The strange thing is that she is not immune suppressed right now. She definitely has a weakened immune system, but her counts are really good. Her body should be able to keep the bacterias under control, but for some reason she's not. They are thinking that one of the bacteria infections could be stemmed from her original buddy. The surgeons didn't remove it 2 weeks ago when they put her new buddy in, her Hickman. We wanted it out, but the surgeon said that it is better to keep it in case we need additional access to her veins or for when we take the Hickman out the port is better because it is located under the skin and not exposed to germs, where as the Hickman is on the outside of her body and can get infected easier. She has had bacteria infections before that have grown from blood drawn from her old buddy, so it is possible that her old buddy may be the source of the infection. At least that is one possibility and they are discussing and trying to figure that all out today. They have to make the decision soon before her counts drop too much lower.
I am just so glad that she is tolerating everything so well so far. She could be a lot sicker with two bacteria infectious and these major chemo's going into her body, but so far today she is still just spunky little Avarie.

Transplant has Started!

After thinking everything was going to be put on hold for awhile, we have now moved ahead and started conditioning, which basically means we have started transplant. I woke up around 4am to the nurse telling me that we were going to go ahead with the transplant and she was getting ready to give her the first chemo. Luckily I was awake enough to stop her and ask about the anti seizure med that she is suppose to have first. The nurse didn't know about it and went to check with the Dr and came back with the anti seizure med and then started chemo about an hour later. The anti seizure med is to help prevent her from having a seizure, obviously, but the reason is because this particular chemo can cause seizures. So we are now into day 1 of conditioning. The problem is that her blood culture came back positive for a bacteria. We got this news around 9am this morning. So now they are debating whether to continue with transplant or stop and wait for her to clear this infection. They have to make the decision soon because later today is the "point of no return". Once she starts her second chemo this afternoon we have to move forward, there is no going back after that one. So the Dr's are all meeting and discussing right now. I'll let you know how it goes.
They decided to start the transplant because her fever had gone away and she was not having any symptoms so they felt like it was safe to proceed, I wish they would have waited just a little longer though for the culture results. But I know we're on a tight schedule and it is important to try to stay on it if we can. We don't want to lose the donor.
I expect there will be frequent updates over the next couple weeks, sometimes even a couple in a day like today. I expect to keep this as a running journal of what is going on for everyone to keep up with. So check back on other posts if you think you might have missed something.
Avarie has been very anxious and upset since we got here. She is scared to be in a new place with new faces. She has asked to go home or back to Emanuel several times. We have tried to just reassure her that everything will be alright and her response to us is "Stop talking to me!" Sounds just like her, huh!
The chemo, Busulfan that we started this morning has already upset her tummy and she's already thrown up twice. They are going to start her on TPN tomorrow because we don't expect the upset tummy to get any better, we expect her to get worse. I am glad that they are on top of that though. I want to make sure she is getting her nutrition, we've done the wait and see how she feels tomorrow or trying to push her g-tube feeds, which makes her just throw up more. They obviously have done this before.
I'll update again when I have something more.

Transplant, or Not! At least not Yet!!!!

Last night after the party I started to get sick. Our house has had a cold going around it over the last few weeks, but so far Avarie and I had stayed healthy. Last night though my eyes started to get yuky and red and I knew I was in for it. Today I have been doing better but I can feel a little heaviness in my chest and I know what that means. I had Craig do her meds and tried to stay away from her as much as possible, but she started to run a low grade fever right as we were loading the car and had a little case of the sniffles. We came anyway, because I knew they were going to want to see her either way. Its not like transplant is just something you can say oh well, we'll start next week. We have the donor to think about and he is on meds right now getting ready to be able to donate to her. I'm sure we're not the first people ever to have something come up where transplant has to be put on hold, but it is definitely a huge inconvience.
They are keeping us overnight. Her fever has gone down, but we were having a problem keeping her oxygen stats up. We did a chest x-ray trying to see if there was something there, we just couldn't get her stats up even with oxygen. A little note to her nurses at emanuel, they will appreciate this part. They all know how much Avarie loves oxygen, so everytime they would try to put the O2 mask on her she would get so upset she would start to hyperventilate making her stats go down even lower, so we stayed with the blow by O2, which just wasn't doing enough. The x-ray came back clear and the Dr's were just puzzled. She sounded completely clear, so why her stats were in the 80's even dipping a couple of times into the 70's they couldn't figure it out. I explained that that is just what Avarie does. She creates situations to keep all the medical staff on their toes and to try to make them smarter people. I told them if they called over to Emanuel the medical staff there would get a pretty good kick out of our current dilema, not that they would want to hear she was sick, just that it was Avarie being a difficult puzzle again.
Anyway, one of the Dr's finally put it together that she takes a drug called Dapsone. In very rare cases, less than 15% of people can have a strange reaction that can make their O2 stats appear low even when they're not. They ran a blood test to verify it and turns out he was right. So Avarie is off of Dapsone for now and off of o2.
Its been an crazy day, not sure what tomorrow will bring. Her temp is normal now and she doesn't seem to be having much of a runny nose, but if she has what my other kids have had and what I am getting, this is a bad cold. I thought the baby was over the worst of it, but I got a call from my sister tonight say "Sawyer is a mess". Great just what I want to hear that not only is my baby a mess and not with me, but that he is still sick. I don't want to hear that his cold has lasted this long, I need it to be a fast one for both Avarie and me. GRRRR!
I'll post tomorrow as soon as we know anything, at least her ANC is great which means she can fight infections great right now, hopefully her body and her blessing that she had this morning will do the trick.

Suppose to Just Be a Little Get Together with a BBQ

So I had a dream of a little get together to say hi to all our friends and family and good luck to Avarie as she heads to transplant. Instead I had some amazing friends take over for me and gave Avarie the Grandest Party Ever! We pulled up to a live DJ fully decked out with speakers larger then my children, a princess bouncy house, tables of food and goodies, a table full of fun auction stuff that I wasn't allowed to bid on and friends and family starting to arrive. There was a cotton candy machine and snow cone machine, which the kids ate on the whole time. Three lovely young ladies dressed up as Snow White, Cinderella and Sleeping Beauty and followed Avarie around the entire time helping her, they also did face painting. Then Batman showed up, the best Batman EVER! He did the most amazing performance and show for the kids, with magic and balloons. The kids had the best day ever and so did Mom and Dad. Well actually Craig wasn't feeling well and took a sick little baby home early, but the rest of us enjoyed every moment until it all came down.
Thank you Everyone who came, it was so much fun to have all of our friends and family in one place. We see our family at family gatherings once or twice a year, sometimes we run into each other more often. Our friends that were there ranged from friends that I haven't seen since high school to friends from the Gladstone Ward where Craig and I grew up to friends from our current Ward and the in between time. We might see those people occasionally here or there or on Sundays, but to have so many of our friends and family in one place all together for us was so much fun. I loved every moment.
Thank you everyone for bringing such good food and buying things from the auction. With Craig out of work every little bit helps us right now and we are so grateful to all who donated or bought something at the auction.
I would also like to say a special Thank you to a couple of women who are amazing and put this all together in just four days for Avarie. I am just blown away by them and all they were able to accomplish and all they were willing to accomplish. They are amazing people.
A lot of people took pictures yesterday, these are a few I took off a friends blog that she took. I hope she doesn't mind. I will post more as I find more. Thanks.

Great Week Home, full of GOOD TIMES!!!

Avarie is having the best week ever, except for the almost two year old who beats her up everyday. Sawyer just can't help himself and hits or throws things at her several times a day. Then he kisses and hugs her and she forgives him immediately, but she is definitely nervous every time he comes around. That darn little man. We have tried everything to get him to stop. We've put him in time out, redirected, yelled, even spat his hand. Nothing works and the more attention we pay to it the more he does it, but we can't just not ignore him and let him keep hitting her. Otherwise everything is going great. Her appetite is coming back with a vengeance. We can't keep her full, she doesn't eat a lot at each sitting, she just eats all day long like a little cow grazing in the field. So I attached a video of her eating pancakes. The video is from Tuesday, that was the day she first started to really eat. She had been losing quite a bit of weight over the last couple of weeks, but I bet when we check in on Sunday evening she will have put a good amount of weight back on. There are also pictures of her collecting eggs with Grandpa Foushee. Grandpa has a whole bunch of chickens and a rooster or two. I never knew roosters actually crow all day long, not just in the morning, talk about annoying. For anyone concerned about the risk of touching the animals, we scrubbed and scrubbed and scrubbed her hands after she collected the eggs and we didn't let her touch the animals or go into their cage, just on the outside of it. She really enjoyed that. Also their is a picture of her at her brother Carter's Kindergarten graduation. Yes, kindergarten graduation! Might be a little overkill, but oh well it was cute. Avarie thought it was so neat to watch Carter walk across the bridge and give the 1st graders on the other side a high 5. All part of her fun week home. Yesterday we took all the kids, minus the baby to see "UP", it was a cute movie, love the old man fight scene. Today we went to her photo shoot in Portland and we're headed to dinner and then a night of board games. Then tomorrow we are driving to the Oregon Coast Aquarium in Newport to see fish!
It is hard to think about doing the transplant right now when she is doing so great. She is going to be so sick when we start killing her bone marrow and it is going to be awhile before we see this happy energetic little girl again. I just hate the thought of it. When she was really sick, it was what I wanted more then anything to hurry and get her in so she could get better. Now she seems better and I feel like we're going to be taking her and making her sick again. I know we have to do this to give her the best chance of survival to get healthy and stay healthy again. Its just hard to see past the fact that I have this happy little girl who is doing great right now and we are then going to go and purposely make her really sick. Oh well, I know its for the best.
Just a reminder we are having Avarie's "Going to Transplant Party" on Saturday from 11-2 at Max Patterson Park in Gladstone. Please come and have fun with us before we begin this next part of our journey. Hope to see you all there. Thanks for all your support.

Please Join Us!!!!!!!!!!

We are inviting all of our friends and family and friends of friends and family of family to please come and join us at a Going to Transplant Party on Saturday June 13th from 11am-2pm at the Gladstone Park. We are going to be serving hot dogs and soda and asking everyone else to please help us make it a big and wonderful pot luck. We are hoping to send Avarie off to transplant surrounded with all of the people who love her and have supported her over this last year. Even if you can't bring something come and say good luck to her and us as we embark on this next phase in our journey. We only ask that if anyone has any illnesses that they please send their reguards. Avarie will be checking in for transplant Sunday night and we need to protect her from any illnesses. We are taking a bit of a risk having this party, but we have taken as many precautions as we can. We are making sure to have it outdoors and asking that no one kiss Avarie.
We are hopeful for a wonderful turn out. Please leave me a message if you have any questions. There will be signs helping direct you to the park off of the Gladstone Exit off 205. If you wish to map quest it, map quest John Wetten Elementary School in Gladstone and follow the directions there, it is connected to the school.
We hope to see all of you there to celebrate as we begin this last step that will hopefully bring us our cure.

Going Away Party At Emanuel

Friday was a very difficult day for us. We had to say good-bye to our friends and family at Legacy Emanuel. We love everyone at Emanuel. We are especially close with several nurses and our Dr's. They have become more then friends they are part of our extended family. We love them. They have seen us through some of our darkest days and they were there for some of the best. They were there every day with us caring for our daughter even when she wanted nothing to do with them. I know they all have great memories of Avarie yelling at them and telling them how much she doesn't like them. A few of them have some really funny stories from there time with Avarie and all of them know about her "sparkling personality". If any of her nurses are reading this and wish to share one of their fun memories of her I know we would all love to hear them and have them here for her for when she is older to go back and read.
Our nurses were there for us when we needed a shoulder to cry on or an ear to listen. They were there with chocolate peanut butter shakes in the middle of the night to celebrate Avarie hitting remission. They were there during all of the times her port stopped working and they had to try to pull labs at 4am. There are so many memories and we will miss them all so much. Emanuel became a home to us and it was very hard to say good-bye. I know there are several relationships that we formed there that we hope to always have with us. They will all definitely be invited to Avarie's graduation and dance recitals.
We are so grateful for the wonderful party that was put together by our wonderful Childlife Specialist, Jess. She put an amazing party together to say good-bye to Avarie. It was like Christmas morning. Avarie's brothers and sister received gifts too and not just little gifts either. It was a wonderful party and a lot of fun. Avarie was able to have two of her best friends from the hospital attend the party. One we knew would be there the other was a surprise. Italya is a little girl who Avarie would stay up late and play with. Some nights they both had late naps and so they would play Polly Pockets or watch a movie until late and by late I mean midnight. Then there was Devan. She is 13 and she took such an interest in Avarie. Devan and her twin sister Taylor painted Avarie's toe nails and finger nails or would sit and play with her and talk to her. Avarie loved Devan. We didn't expect to see her again, and were sad to see her admitted again, but grateful for the chance to say good-bye to her.
We are excited to be moving on to this next hospital and to a group of wonderful nurses to come. But I sure wish we could take our nurses with us. That would sure ease some of my concerns. Its hard to leave the people who have been caring for your daughter and know everything about her. They know her moods and that is definitely an advantage when caring for her.
We are planning a "Going to Transplant Party" for all of our friends and family too. We are in the process of planning, we are hoping to have it on Saturday. I will get more details to you in the next day or so. We're trying to secure a park with a covered area. So check back here tomorrow to see if I've had any luck with the planning.

Transplant Info Day

We met with the Dr today and got all the info for the transplant finalized. Avarie will be checking into the hospital on June 15th to start her transplant conditioning. Conditioning is all the drugs and things needed to prepare her body for the new bone marrow. She will receive drugs that kill her current bone marrow and then once it is completely gone on about day 10-11 she will receive the transplant.
They are not going to do radiation on Avarie, they don't feel she can handle it. They consulted with the transplant Dr in Seattle too, she has been performing transplants since 1972 and is considered one of the top transplant Dr's in the world. Her recommendation was to not give this child radiation too. They explained to us that transplant is a delicate balance between trying to kill off the old bone marrow and cure her cancer and trying to keep her alive through the actual transplant. By not doing radiation it increases her chance of relapse a little, but the risks from the radiation to her would be worse. We are also not going to be using as strong of drugs on her as they would normally, but again they worry weather her body would tolerate it and survive it. So they will be using gentler drugs, if there are gentle chemo's. They are strong enough to destroy her bone marrow and gentle enough to not kill her. She will then on June 26th receive her transplant of new marrow. The donor will actually just give blood. He is taking a growth horomone to increase his amount of needed cells, I can't remember which blood cells they are looking for and taking from him, my brain is on information overload right now. Anyway after he takes the drug for awhile they will take blood from him and weed out the ones they want and then they will ship it to us and we will hook it up to Avarie's IV and it will drip into her blood and find its way to where it belongs. It is only about an hour long drip of basicly blood, pretty uneventful from what I understand and then her transplant is complete. We just then wait for the new marrow to start regrowing, it will take about 2 weeks for the marrow to start regrowing.
There are a whole bunch of other details and possible and probable side effects that we will have to worry about and treat, but again my brain is on overload and its just too much info to try to remember and write down right now. As that info processes in my brain or becomes relevant I will share it.
We are both excited and nervous about this. I have to admit I am nervous by how concerned the Dr's are about Avarie. I am grateful that they are taking her case so seriously, but its a bit unnerving at the same time. Transplant patients all become "fragile" at some point during transplant, but she said Avarie will be admitted with the "fragile" title starting at day 1. I know that Avarie will be getting the best care possible, I feel very good about it and very confident in Dr. Nemecheck's abilities, but I am also nervous to know that my child is more fragile then most in the same situation.
When we check into the hospital our hospital room will have a computer with internet access, so we will be able to update regularly, daily even. So I promise to keep everyone as informed as possible. This next week we are just hoping to enjoy each other and have a good time together as a family. We are planning a going to transplant party for all of our friends and family to join us. We don't have it planned yet, but we are thinking about this next Saturday, June 13th at a park. We want to invite everyone to come and enjoy a last weekend together and celebrate the strength and bravery that Avarie has shown through all of this and to give her a great start to her transplant.

"Blood Shots"

Today was another long day. Avarie had to have two tests done today, that seemed like it was going to be simple enough. I knew we would be there for awhile today, but it ended up being even longer and more stressful then I had originally thought it would be. When we first arrived Avarie had to have an IV put in. They were going to inject a radioactive dye (or some type of radioactive thing) into her blood and then test her blood every half hour to see how her kidney's processed it. Its called a GFR test, it tells them how well her kidneys are functioning. IV's are Avarie's major anxiety issue. She calls them "blood shots", she hates them. They got the one placed in her hand ok after a whole lot of screaming and another nurse holding her down. Avarie begged the nurse not to hold her down, but we were all worried Avarie would jerk her hand while trying to put it in, she was hysterical at that point. After we got the IV placed we were sent to NucMed. Thats where they injected the dye. Of course when we got there they IV wasn't working. In the whole 20 minutes it took to get there and wait to be called it had stopped working. So we had to have another IV placed in her other hand. She was beyond hysterical at that point. She actually made herself sick. I think I forgot to explain why they had to place an IV when she has a Hickman that has immediate access to her veins with out any poking. The dye that they were injecting sticks to the tubing and we don't want to destroy her working lines, so an IV has to be placed.
After the IV was placed we went up to the Oncology clinic and hung out until our schedule blood draw times. We were there for about 3 hours hanging out and having our blood drawn every half hour. Well there were only actually 3 blood draws, but they have to wait awhile for the stuff to start processing in the kidneys.
We then also had a CT today. Of course they couldn't keep the IV from earlier in her hand. They had to remove it as soon as they injected the medicine earlier in the day, the reason is because the radioactive material hangs out in the line and will continue depositing small amounts into her blood stream messing up the test. So that meant that we had to do a 3rd IV for the CT. Again they have to use a different line for the CT because of the dye and the way it distrubutes into the blood stream, or some mumbo jumbo like that. She did better for that IV because we medicated her a little before hand. She did great through the CT, which was supposed to be at 2:30 but didn't end up being until almost 4:30. Oh well at least they were able to still fit her in.
Tomorrow is a really important day. We meet with the transplant Dr at 10:30 to discuss Avarie's test results and decide plan everything for her transplant. We will decide which donor to use, the live donor or the cord blood. We will decide which course of chemo's to treat with to kill off her bone marrow and plan the exact transplant dates. We were given a small peek into what way the Dr's are thinking about going today, but I will hold off telling about it until we meet tomorrow with her and make the final decisions. I'll be able to explain it all better then.
Oh by the way has anyone ever tried to actually navigate OHSU, its huge and crazy. We had her IV placed in the actual OHSU building and then had to go to NUC Med in the Sam Jackson building and then to the Oncology clinic at Doernbecher(which is a different building too) and then back to a different floor in OHSU again for the CT. The place is huge and like a maze sometimes trying to find your way up certain elevators to get to the skybridges that go across to the other buildings and then down one elevator to get to the other elevator to go up to get to the other sky bridge to the other building. They are somewhat connected its just a crazy maze trying to find your way through it. At least I know we won't get bored when we're staying there, Craig and I will be able to just go and explore when Avarie is asleep and I don't think we will ever be able to see all of the hospital and learn our way completely around. The place is enormous.

Surgery

Surgery went well today. They were able to place the new Hickman in with no complications and they removed the nodule on the back of her leg and are sending part of it to Pathology and the other part to try to grow lots of different cultures from it. I am hoping Pathology may come up with some answers. The Pediatric Dermatologist that has been checking in on Avarie over the last several months and then biopsied her nodule today says he doesn't think it is Sweets Syndrome, but his report several months ago indicated that he thought it could be. So who knows, we are sure hoping to get some answers.
It was a long day and we are glad to be home. We were suppose to just be home all day tomorrow recovering, but we need to go back in and learn how to change the dressing on her new Hickman.
She has not been able to keep any food down so far tonight. We are going to try her feeds at a really low rate through the night and hope that she keeps something down. We'll be sleeping with a bucket close by all night.