Back Pokes, Biopsies, Chemo OH MY!

The title is suppose to be read to the Wizard of Oz's song, just incase it sounded funny to anyone.
I just wanted to drop a quick note that we are headed in today for a Bone Marrow Biopsy and a Lumbar Puncture(Spinal Tap). Avarie has these every few weeks or so. Its actually been over a month since our last one, I think that's the longest we've gone so far. They always like to recheck and make sure that there is still no trace of Leukemia in her, make sure she hasn't relapsed. Today is one of those days and she will also be getting an injection of chemo into her spinal column. Its called Vincristine and it is one of my least favorites. It makes her nerves feel weird. I think this drug is part of the reason that she stopped walked, it was the first chemo given to her during her failed Induction. Induction is what they call the first month of chemo when they want you to hit Remission, which Avarie didn't, but she did stop walking during that time. I think the Vincristine messed with her nerves making touch of every kind feel weird to her. She was already in a lot of bone pain since the cancer was no under control and still in her bones, and then we added all these weird feeling nerves to it. I think the combination just did her in and then her lack of nutrition and immobility did her muscles in and made them atrophy. I think it was the perfect storm, it just all happened just so and boom she now hasn't walked or stood in 6 months. Since she has been getting stronger over the last few months we are planning on really pushing ahead with getting her walking and standing over the next two months before transplant. She needs to be stronger for transplant, the Dr's are concerned that she is so weak. I can't say that I'm not concerned about that also. Transplant will make her even weaker then she is now, so it would be better to start at a better spot and try to maintain mobility rather then let her dwindle down further then where she is now. If we don't get her walking before transplant she will not be ready to start trying to learn to rewalk until maybe December, by then it will have been over a year since she walked, I don't like that idea. That is too long for her to have not used those muscles. So walking is of huge importance right now and I think we are all on board with really starting to push it now. I think she is ready.
We will be home later today, it is an in and out procedure and then we are back in for a 2 hour chemo tomorrow and then we are admitted on Wednesday and home on Friday if all goes as planned.

Finally Getting Some Transplant INFO :)

We came home Wednesday evening. Her fever broke Tuesday afternoon and so they let her come home Wednesday night after getting another blood transfusion. Avarie has not quite been herself this week, even after the transfusion she is just so exhausted this week. Usually she is just that tired when she needs blood, that is one of the signs of needing more blood, but even after getting it she continues to be really tired. I guess she is just trying to heal. I know I sure would sleep a lot if I was going through this.
We got some REALLY GREAT news today.... Avarie has a confirmed donor. All we know is that it is a man and he is a perfect 6 point match. That means that the 6 main DNA markers that they look for match hers. We are so excited. I can't even explain the feelings I have toward this man that I don't even know. That he would willingly be put on the registry and donate just because he knows it will help someone. He is taking time out of his life to go through all the additional testing and then the time of giving blood to collect the stem cells through all because he wants to help someone. I love this man whoever he is. My understanding is that he will remain anonymous to us for at least a couple of years and then we can request to meet him and if he accepts then we can exchange info. They do that to protect everyones privacy in the beginning and then just in case the transplant doesn't go well, there is no guilt on his part that he failed some how and caused a sad outcome or any blame on our parts, not that we would at all, but you never know how people will react in this situations.
The plan is to still move forward with the transplant in June, we don't have an exact date yet. We are planning to meet with the transplant team in a couple of weeks to re-evaluate Avarie and make sure that they still feel OK about moving forward with transplant for her. They are concerned about how weak she is already, that's not a good thing when going in to transplant. They like you to be as strong possible because the transplant is so hard on the body.
The other issue that came up today is where we live. The Dr's are concerned that we are a little too far away from the hospital for her 100 days of intensive follow up after the 4-6 weeks of isolation. The requirement is that Avarie be with in an hour of the hospital at all times, but they prefer them to be within only 30 minutes if possible. We are currently with good traffic about 45 minutes away, but we all know how bad I-5 can get around the Portland area during rush hours. They said that they won't require us to move closer, but that they are nervous about our location. They do require some families to relocate at least temporarily. We had been considering a move anyway and this has just confirmed to us that we need to aggressively look to relocate. Our current plan is to try to find a home around the Milwaukie, Gladstone, Oregon City area. We are planning on moving in with Craig's parents, so we are looking for a home that would accommodate both of our families. So anyone out there that knows any homes for rent that are at least a 4 bedroom please think of us and get the word out to your Wards and friends. We need something that will allow our two families some privacy. My mother and father in law love us dearly, but living 24/7 with us and our children will be a little trying for them. They also have Craig's niece and her 4 year old daughter staying with them, so we need to accommodate them for awhile also. We would love a 5 bedroom, but after looking at the prices of 5 bedrooms, we have decided that a 4 would do. It just needs to be the right set up and layout for us to make it work. We are hoping to stay in this situation for awhile to help us get through this time and hopefully to allow Craig to go back to school. After this last job loss, we have been praying for the right direction. We have always felt good about Craig going back to school, but we have let life get in the way time and time again. We now know what sacrifice really is and realize that we can make school work. We believe we are definitely ready and able to sacrifice to make it work, it will all just depend on the living situation. If we can find the right house then we will get through this and we will finally be able to accomplish something we have been wanting and needing to do for quite a while. So please, pass along our need for a home to anyone that you think of, sometimes people are considering renting a home, but haven't quite decided and if they hear that there is someone desperately looking then they might consider us and a lot of times people don't advertise the home because of the cost or they're not sure how to do it on the computer(this was my dad's problem for awhile, he finally figured it out though). We would like to stay around the Milwaukie area, that is where my in laws have spent the majority of their life and they don't want to move from that area, but anywhere even close could be considered if it was the right house. Thanks for reading this long post.

Humpty Dumpty Had a Great Fall!

I can honestly say that I think I have been pretty strong and held things together through almost the entire last six months that this has all been going on. That all ended over the last several days. Honestly I think things have been building up inside of me and I don't think I have dealt with a lot of what has been happening to my family. It all came out over the last several days on my loved ones. I am so sorry to everyone that heard my venting and my anger. My anger is in life in general not at any of you and that didn't come out. I know that life is not fair for anyone, but lately I feel the weight of the world on my shoulders and it just took a small feather to land on my shoulder to make me fall. I am still trying to sort myself out, I just feel a mess right now. I know everyone loves me and wants to help, I just don't know how to help myself right now and that is where my kind of help is going to need to come from. No one can step in and live my life for me right now, somehow I have to figure out how to pick it all back up and keep going. I can deal with Avarie's illness I have learned so much and I feel very strong in helping her through this mess. My lost feelings come from trying to figure out how to live the rest of my life while still trying to live Leukemia. Right now life almost feels like a small break in the drama that we had early on. But on the other hand it feels like there is all this anxiety building up for what is coming. I am so scared of the transplant. It is such a huge scary thing, and everything is just building up to that point which is only about 2 months away. We don't have a date set, but its coming. Anyway I could go on and on about everything inside of me, but honestly I don't have it all figured out within my own mind, so it just comes out like a big jumble of emotions. To anyone that has heard my tirade in the last few days, I am so sorry, I love you all so much. I can not get through this with out any of you. Maybe because you are all my comfort zone I feel safe to fall in front of you. That doesn't make it right. I just hope that you can forgive me and understand how much I truly love you all so much and I am so grateful for all of your love and support. Please don't give up on me, I will figure my emotions out and get control of myself again.
UPDATE:
Avarie went in for an appointment this morning, she had been running low grade fevers for the last several days, but never quite got up to 101, at least not according to our thermometer. When Craig took her to her appointment this morning she was 101.1. That means she was admitted and will be there for at least the next 48 hours. Her immune system was completely gone, her ANC(Absolute Neutrophil Count) was 0. Neutrophil's are the little immune fighting cells in your blood, so she has absolutely no ability to fight anything right now. Honestly she'll probably be in the hospital until at least Thursday since Craig just called me around 4 and told me she is now up to 102.3. We're due next week for chemo again, so the next couple weeks will probably be a lot of hospital stays. Hopefully it will give me some time to talk with our social worker while I'm there, she will be great at helping me sort through these tough emotions I'm trying to deal with.
I will have Craig update in the next day or so and let you all know how things are going, unless I am able to slip away and find the computer room they claim they have, but I have never found. Actually I know where it is, I have just never found an opportunity to make it in there.

Long Dr Appointments

Avarie had a Dr. appointment yesterday. I had expected a pretty quick check up, unfortunately I was wrong. Her appointment was at 11. They had a hard time getting her Buddy accessed, we usually do. I don't know why exactly, but they just almost always have a difficult time accessing it, it usually takes a little while of moving the needle around or having to repoke her. That is always traumatic for Avarie, she hates the Butterfly Needle. That is the name of the needle that they use to access her Buddy. After we finally got it accessed they drew her blood for her CBC(Complete Blood Count). When her counts came back, I was shocked how low some of them where. She ended up needing a red blood transfusion and a platelet transfusion. They were able to do the platelet transfusion in the day treatment center, it only takes about an hour from start to finish. It actually only takes about 30 minutes for the actual platelets, but Avarie has had allergic reactions to the platelets before so she has to be given Benadryl to counter any reaction she might have. Then we had to be transferred to the inpatient floor because it was going take 4 hours to administer the red blood cells. Normally it only takes about 3 hours for them, but because her counts were so low they had to do it over a longer period. We ended up not coming home until almost 11pm last night. It was a very long day.
Today Avarie has started running a low grade fever. We are close to the have to call range, but haven't quite hit it yet. We have our bags packed just in case, because her immune system is completely depleted and I know the fever will most likely just keep rising with no immune system to stop what ever it is affecting her. I have put the Dr's office on alert, now we're just waiting to see if we actually hit 101. Right now she is at 100.7. The Dr said he would be "happy" if she could make it until Monday, her next appointment time, but he sounded like he would be surprised if she did. I hadn't expected her counts to remain down so long with this chemo, but I was told yesterday to expect them to be down most of this next week also and most likely a couple more transfusions during that time. There are just so many different chemo's its hard to keep straight which ones do what to her. A few of them I am very familiar with and I know what to expect, but this one is one she has only had one other time and it was during the time when she was so sick and in the hospital for the 2 straight months running almost consistently fevers of 104-105. So I wasn't sure what to expect this time. I guess I know now, and hopefully we never have to have it again. She is not scheduled for this chemo again. It is a few different ones that she will get over the next few months before transplant. We have Vincristine next, I don't like vincristine, but oh well, its what is next.
I'll try to update soon and let you all know where we are and whats going on. I've been a little lazy on updating lately. Everything has just been going so well, that I just get busy living life and trying to enjoy some of it. I'll try to update more soon.

Nightmares make for LONG DAYS!

Avarie is having a hard day today. She was up most of the night with nightmares. She doesn't remember what the nightmares are she just wakes up crying and doing that short little sharp breath that comes after the crying when she is trying to calm down. It has made for a very long and emotional day for her, which makes for a long and tiring day for the rest of us. I remember the Dr telling us a little while ago that it is actually a good thing that Avarie is having nightmares. It means that her subconscious is starting to deal with everything that has happened to her, its letting the bad thoughts out. It means that she is feeling safe enough to let herself start to heal mentally. She is going to have a lot of healing to do, but it is nice to know that she is feeling safe enough to let the scary stuff out.
She was really sad that she couldn't go to church today. Once she realized that she wasn't going it started a huge melt down that required some Adevan to calm her down. She gets like this when she is not feeling well or sometimes when her counts drop really low. Since we just finished chemo this last week I am betting its that her counts are really low. We have an appointment tomorrow to get checked out. If she needs any transfusions it will make for a long day, but oh well, you start to expect that after a while.
She continues to get stronger. She got a pair of shoes yesterday at Fred Meyers. She picked out purple sparkly crocs. She has not worn a pair of shoes since September of this last year and even then it was only occasionally. She hasn't really worn shoes since the beginning of July when all of her problems started. She's not ready to start walking yet, but she continues to get stronger, hopefully in the next couple of weeks that will be something she can start trying. Well I guess we've got to get her to bare a little more weight on them first, I guess I might be getting ahead of myself. It is just exciting to see her starting to do better. She hasn't walked now in almost 6 months and for the 2 1/2 months before that she only barely walked. She hasn't been able to run around and play normally in almost 9 months. That's a long time for a small child. I just want her to be able to run around and play, but we're getting there. I can feel it, she will be doing it someday soon.
Does anyone know how we get a handicap permit for our car. There have been several times when we have been transporting Avarie that it sure would be nice to be able to get her out easier in one of the handicap parking spaces. I'm just not quite sure how to get one. I plan on asking the Dr's tomorrow if they know, but I thought maybe someone out there might also know just encase they don't.

Tricycle's and Chocolate

Avarie was able to come home on Wednesday, it just took me a couple of days to sit down and update, sorry. Things have been going really well. Avarie is continuing to get stronger. She was able to ride a tricycle around the hospital during therapy. She was enjoying it so much that they let her keep it for the evening and she was riding it late at night through the halls of the hospital. She had taken a 3 hour nap and didn't wake up until 8pm, that was a long night. When we're at the hospital our schedules just get really messed up. She had a lot of fun with the bike though. I think we're going to try to find one at a garage sale for her, it would be good exercise for her to try to do here at home too. The bike she had this last summer is just not very stable.

My sister said I should blog about this last little piece of info, she found it really funny. Avarie is not eating at all(that's not the part she finds funny), so she is almost exclusively being fed right now through her g-tube. It is a tube that goes into her stomach, it was surgically put in several months back. We hook her up to a machine and feed her through it. We normally always use this particular formula that is Unflavored, according to the package. When we were at the hospital this last time they brought in the feeds but they didn't look right to me. Normally her feeds are bright white looking, but this was discolored. I made them stop and figure out what was different, because they definitely were not the right feeds. Turns out the formula comes in Chocolate and that is why it looked weird. Well the chocolate feeds smell very chocolaty. When you would walk in her room all you can smell is chocolate. When she threw it up one time, we decided to not use chocolate feeds with her, it didn't smell well to throw that up. So she has not had chocolate feeds since Monday night or early Tuesday morning, but Avarie still today smells like chocolate. I even washed her down really good last night and yet she still smells like chocolate today. My sister was here yesterday and I told her about it and so she bent down and smelled Avarie and started laughing because Avarie totally smelled like chocolate to her too, it wasn't just me and my weird mommy senses. I'm hoping the smell will eventually wear off. I guess she could smell like something worse and believe me at times she has, but the chocolate smell is starting to bother me. I am across the room from her right now and I swear I can smell it even now.

Life Almost Feels Normal, Almost

We actually got to go to church today and attend our classes. Avarie went to her class today too, not just sacrament. She had a really good time. Her Sunday School Teacher, Heather Hawkins, is amazing. She made hats for the entire class to wear. They were hot pink hats with buttons and bells and silly things all over them. The entire class including the teachers and Craig who stayed with Avarie wore them. It was so cute. We are now home eating lunch and doing laundry and it just feels normal. It is such a good feeling. Unfortunately it won't last, we have to go back for chemo tomorrow. We check in at 9am and it is suppose to be at least a 48 hour stay. We hope to be home Wednesday, probably around 4 or 5pm. Of course it is always followed by the famous words of "Unless she gets a fever". Man who ever though fevers could be such a huge deal. Of course this round of chemo medicines that she is getting does sometimes cause fevers. It is one of the main side effects of this particular chemo med, but maybe we'll get lucky. I think she is due for a little more luck and she has been on such a good streak this week.
This last week Avarie has gone to visit both Grandparents homes, gone to her Auntie's house twice, gone to her cousins baptism, gone to church and even went to the grocery store once(but she wasn't allowed to touch anything there, stores are not the cleanest places). She has done more in this last week then she has done in the 5 1/2 months before it. It has been a great week.
That makes it harder to go back in for chemo tomorrow. I love chemo because it saved my baby's life and I know with out it we would have lost her months ago, but I hate it at the same time. I hate what it does to her and I love what it does to her. It is a Love/Hate relationship. I don't think I have ever hated and loved something so much in my whole life. But that is the best way I can explain how I feel about chemo. It is hard now because I see her doing so well and so I want to just stop poisoning her and let her heal, but I also know that it is necessary for her to survive. Again that love/hate thing. At least now we have renewed hope that she can get better, that she will get better when all of this is done. We lost our daughter for so long to this illness and we are just finally getting her back. It is such a blessing.
I know it may be difficult for some people to understand, but I don't question why this is happening to Avarie. I use to, to some extent, but I have never been angry and wondered why God would do this to us. I have always know there was a reason. I didn't know what that reason was and I still don't completely understand it, but I have always felt very strongly that there was a reason. We have been tried spiritually, physically and financially. Our relationships with some have grown very strong, while others have slipped away. It really puts your life under a microscope and you really see the people around you that will truly stand by your side no matter what and others that may love you a lot, but are just unable or even sometimes unwilling. There have not been many of those, we have been so blessed to have so many wonderful people that have stood by and helped us. Some people we didn't know very well going in to this and now they are as close as family. I think for me the two greatest blessings that I have gotten out of this so far, and there are many, but the two greatest have been to realize the strength that Heavenly Father has given me. It is more then I could have ever imagined I possessed. The second is my relationship with Avarie. Avarie and I had a difficult relationship from about age 2 on. She has always been an extremely strong headed little girl and with having two other children and many other challenges and struggles in life, I just had a hard time relating to her sometimes. I sometimes hate myself for feeling that way now, but the truth is I did. Now I have this incredibly close relationship with her. I feel closer to her then I do my other children sometimes, which then again makes me feel guilty about my other children. I love all of my children so much, but the closeness that I feel with Avarie right now is something that a year ago I just didn't know if I would ever feel with her. I was always so close with my older two children, and the baby. For some reason it was just more difficult with Avarie. This has definitely changed that. So in a sad way, this illness has brought many blessings to our life. There are so many other blessings we have been given or have at least had our eyes opened to be able to see. Not that if given the chance I would say yes I would ever want to go through this again, but it helps to remember and see the good things since we don't have a choice to go back and undo what has been done. There are always good things in everything if you look hard enough. Still looking for the good in Craig losing his job though. I'm sure its there and at some point we will see it or find it, but still looking for that one. I'll let you know if I find it.

Miracles Happen

Sorry it took me a couple days to post this, but we have had an amazing week home and we have all been busy enjoying it. On Wednesday night a miracle happened in our home. Avarie was in a great mood and was wanting to sit at the edge of the couch with her legs on the floor. She was supporting herself sitting there for a very long time. Then my Dad stopped by to see her and Avarie was so excited by the attention and loving that everyone was so excited to see her doing so well she decided to show off, and boy did she. Avarie put herself down on the floor which really startled me and then stated that she wanted to crawl. Avarie has been unable to move her body by herself for over 5 months. Craig grabbed the camera and I helped her, and she did it, SHE CRAWLED!!! Not only did she crawl with no support from me, my hands were just there to give her comfort, but when I thought she was tired and needed a break she corrected me and kept crawling. She has since crawled 3 more times. It is tiring for her, but she is so excited to be able to move her body again. It has given us all hope that things really are going to get better. It is amazing how such small things can be so taken for granted. I hope I will never take for granted the gift of mobility and health. It has been horrible to watch my baby lose those gifts, but to be slowly getting them back is amazing. I think she is just finally starting to feel better and her pain is finally under control. She is watching neighbor kids and her siblings run around and play and for the first time she is wanting to join them. That is a big reason for her pushing herself. I think she was just too sick before to care, but now she talks about when she is feeling better all the things she wants to do. We are so grateful for all of the prayers that have been offered on Avarie's behalf. We know that it is because of those prayers that she is still with us and is still fighting and now we have been blessed with this miracle. Thank you all for helping this miracle to happen, our Father in Heaven is listening and he has many miracles yet to perform for Avarie. This is just one of many that we will all witness. So please keep up the prayers we still have a long way to go, but it sure feels nice to have come this far and to see such an amazing miracle happen right before my eyes and luckily because we had a camera we have it for all of you to see also.

(: (: Having Good Days :) :)

Things have been going really well since coming home Sunday Evening. Yesterday we took Avarie for a family walk, which she really enjoyed as long as Carter wasn't pushing her. It is so sad because he tries so hard, he pushes her so slow trying to be so careful, but she is just does not like him to do things for her. It breaks my heart sometimes because he tries so hard. I have tried explaining to her how much he loves her and how it hurts his heart when she acts like that to him, but she is 4 and just doesn't quite get it. Sometimes she will be so sweet with him, like she likes him to hold her hand during some of her wound dressing changes, which he loves. He is such a tender hearted child, he loves to cuddle and he just wants to do that with her. We are going to keep working on her. Part of me wants to give her a little control in her life to say who she cuddles with and lets do things for her and I try to most of the time, but I worry about Carter and that he is feeling left out. This is a hard time on everyone, I just don't want to see any of my children suffer and I don't think Avarie letting Carter push her wheelchair or cuddle with her will make her suffer, but it does make Carter suffer that she rejects him like that. So yes after writing this I am even more determined to fix this. Thanks for listening. My mind works best when I can vent and talk about things.
Other good things that happened yesterday, since Avarie was in such a good mood, and I mean she was in a really good mood we decided to take her to Craig's parents house to visit. She has not been there since before her diagnosis which was 5 months ago. Craigs Brother, Daren, and his family came over and so did his sister Rachelle with two of Avarie's cousins and Lucy, Avarie's cousins and one of her best friends in the whole world where there. Lucy lives there. They all played together in Lucy's room for hours. Avarie was laughing and playing and just seemed like herself again. We stayed late because we just couldn't bare to take her away from all of her fun. It was so wonderful for her to feel at least a little normal for an evening and to get to reconnect with her cousins again. It has been so long since she has really been able to play with her cousins. She has had a couple of occasions where she has played with some of them on my side of the family, but they have been very few and far between. She was even pushing herself to move more last night. The better see feels the more she pushes herself to try to move. We just need to try to keep her out of the hospital as much as possible. When she is home she is a much happier child and does so much better. I know we are due back for chemo this next week some time, but hopefully it will be a short stay this time. I'm not sure how long of a stay this next one is. We have an appointment today at 1. I should be able to get a better idea of when and what is coming up next.