Pity Party

I hate Friday's. I hate them. It's so easy to pretend nothing is wrong when you aren't in a hospital full of sick children. It's such a slap in the face every third Friday when I'm forced to face reality. The adrenaline from diagnosis has worn off and I'm left with a broken heart that I like to ignore. In between the weeks I try my hardest to drown out my thoughts with mindless TV watching, knitting constantly, and keeping my mind busy with something else until the very second I fall asleep. This NEVER gets easier. I hate blogging too. It forces me to relive everything I didn't want to go through in the first place.

The doctor told me today that we only have five treatments left. FIVE. I feel like I should be so happy but.. I'm not. LCH is funny.. the prognosis is really high, and so is the relapse rate. I met with 3 other families a few weeks ago that have also been affected by LCH. Out of three, two have relapsed MULTIPLE times and the third just barely got done with treatment. There was a 12 year old boy there whose mom told me she's lost track of the relapses. Discouraging, huh?

Our doctors at the hospital say, "Well, it's not like a Leukemia relapse." That is such a punch in the gut. Relapse is DEVASTATING no matter the circumstances. If Avery does relapse she will most likely continue to respond to different types of treatments. The specialist likes to say "We have lots up our sleeves." But what difference does it make?

I feel like she has gone through enough. She is getting older and much more aware of what is going on.  Avery has now started to cry when they access her port. It breaks my heart that she feel like the doctor is "scary". How do you explain to a two year old that they are trying to help her? You can't.

I'm terrified to think about the long term effects that this disease as well as treatment will have on her. My mom tells me to not worry until we get to that point. But telling me that is like telling me not to blink.

I'm just so freaking tired of feeling like this. I guess all I can do is pray that He won't make her do this again.

Alright, I'm done with my pity party - for a bit of good news.

Avery is now eligible to receive a wish from the Make a Wish foundation. If you don't know who they are - look it up. It's the greatest club that you never want to join. :) In about 1 month Avery will be able to "declare her wish" at the Make a Wish building in Murray. She has been given a key and I've been told that it will unlock a door where she will be able to declare her wish to the Wishing Wizard. They won't tell us anymore than that. I don't think she really understands but I do know that she deserves this.

 4 children diagnosed with LCH even though it's considered a "rare disease"

 Avery in her Ariel costume :)

 Avery at her ballet class!

 I think this is supposed to be 1st position...? :)

 Loves being outside

 Playing with the kitchen during clinic

While kids are getting their chemo they can watch TV, play video games, do puzzles, read, play with toys, or eat popsicles! :) 

More tests

Yesterday might've been the longest day of my life. I set my alarm for 5:30 - which I ended up sleeping through and we rushed out the door at 6:37 AM (seven minutes after we were supposed to be at the hospital for check in time). We got up to the hospital in pretty good time and they checked us in to Imaging.

 Waiting with Grandma before they access her port. So so grateful that we had her there! It would've been so hard to do this on my own and she cut out basically her whole day so she could be there with Ave.

 Right before the MRI. This part is the hardest. She's dead asleep and it's so hard walking away from her. 

 Totally zonked out.

 This is the skeletal survey. They make her lay on a hard cold table (and I mean really cold - they have to keep the rooms freezing for the equipment) she has to be completely naked and they are holding her down so she can't move. The last two times we've had these she was practically hysterical - crying, shaking, kicking the nurses.. and they tell you that you can't be in the room because it makes it worse. So I requested this time that they do the survey while she was still sedated. It was sooo much better. She did wake up and cry but not nearly as bad as before.

After the skeletal survey they took us back to recovery so that she could wake up and eat some things. She is was so sweet while she was waking up. She wanted me to hold her the whole time and she kept talking about Mike and Sully from Monster's Inc! 

We had a few hours to kill before clinic so we went to the cafeteria and let Avery sleep a little before we got some lunch. My sweet sister came and met us to see Avery and it made Ave so happy to see her.

While in clinic the doctor came to talk to us about Avery's test results. And we got good news!! Her tumor is continuing to shrink and her bone is still healing! We are so grateful that she has continued to respond to the treatment she's on. After getting her chemo we got to go home at about 2:30. 

The rest of the day Avery was really subdued and just wanted to lay on the couch. She wasn't eating much but she was drinking and the nurses that discharged us after the MRI said that if she didn't feel like eating it was alright because they gave her so much fluid.

Around 5:30 I sat down by her and she felt really really hot - she had a fever of 102! Standard protocol when you have a port is that you have to go to the ER if you have a fever over 100.4 ever since the port is an infection risk. I couldn't believe that we had to go back up the hospital after spending 8 hours there earlier.

Telling Ave we had to go back up to the hospital sucked. She already felt like crap and just cried and kept saying it's not fair! It kind of broke my heart to hear her say that. It's basically the most unfair thing that a two year old has to go through all of this crap. I so wish I could do it for her. Plus after having tape on her chest all day from the port her skin was already really irritated and red. 

We got checked in right away at the ER because they were expecting us and the nurses came in to access her port. It was horrible because anywhere else in the hospital they don't really know what they are doing when it comes to accessing. They just don't do it as often as in clinic. The nurse made Avery lay down (which she really hates because she feels like she's being held down) and then when she put the tape on she put it on way too tight. So they had to take the tape off her already irritated skin and redo it. They had to take a blood draw from her port and for some reason they could flush her port but it wouldn't draw. We had to hold her down for a good half hour while they moved around the needle to try and get it to draw. It was so awful. Luckily after getting a lot of fluid and some tylenol her fever came down and her labs looked good so we were able to go home around 11:00. 

Good news is that Avery is doing much better today. No sign of a fever and she is running around and playing like usual. This girl is such a fighter!

Specialist

These past few weeks I've had an overwhelming need to try and connect with some other mom's or people who have what Avery has. From the beginning, our doctors have told us not to research LCH online... mostly because it would scare us. They were right! I became a member of the Hystiocytosis Association so I could connect with others that have this and do more research. There I found that the chances of having LCH is 1 in every 200,000 and even there there is such a wide spectrum that the chances of finding someone who has something similar is very rare.

There I also found that although the pronosis for LCH is very good, the chances of relapsing is also very high. Not only that but there are things called "late effects" or "permanent consequences" that affect patients with LCH long after they are finished with treatment. These can include neurological problems such as memory loss, stunted growth, learning and concentration difficulties, and higher chances of depression. A really common permanent effect of LCH is Diabetes Insipidus. A lot of tumors from LCH occur in the scull close to the pituitary gland and diabetes insipidus occurs from damage to that glad. The likelyhood of developing DI depends a lot on where the tumor originally started. 

On the Hystiocytosis Association's website there is a section where you can go and read about others who have LCH and read their stories. I went through and read most of them... and many of them had LCH reoccurrence 3 or even 4 times. 

This to me is so discouraging. I feel like I've been living in complete ignorance to what this disease can affect. I was expecting to be done after a year of treatment and that this all would be over. Just thinking that this could happen again is almost unbearable to think about. Even if we are lucky and Ave doesn't have to go through Chemotherapy again, it seems it's likely that she will have other problems to deal with. 

I've connected with another mom in Canada who's daughter is 2 and also has LCH. She expressed to me that there are no specialists and almost no doctors who have dealt with this before. Our oncologist is not a specialist in LCH but there is one where Ave is being treated. I felt really strongly that since we have this specialest that is available where Ave is being treated anyway that we should meet with him. So while we went in for treatment this last Friday we were able to meet with an LCH specialist. Thomas and I wanted to know if extending Avery's treatment longer then a year would lessen her chances of relapsing. Or if the risks of extending her treatment would outweigh the benefits. 

While meeting with him, he basically told us that there isn't enough information to know if having two years of treatment versus a year would be better. Not too long ago, they did a study where they randomly picked LCH patients and treated them with a six month treatment plan and some with a full year. The only difference was that the patients with the longer treatment plan were much less likely to have an LCH reoccurrence. This is originally why we thought that extending Avery's treatment would lessen the likelihood of her relapsing.

We knew that Avery had single system LCH which means that it was only found in one part of her body. Multi-system means that LCH is found in the bones and the organs. Avery's tumor was in the skull and had a soft tissue component to it. Because of where it is and how aggressive her tumor was, Avery is single system with risk of central nervous system involvement and has a higher risk of developing diabetes insipidus. 

We also learned what what our doctors had been telling us previously that if Avery does relapse, it will come back in the same place, was completely false. After talking to the specialist, he told us that if it does come back, she could develop tumors on the top of her skull, in her legs or arms, or even develop into multi system if it does in her organs.

Although living in the dark can sometimes be easier, I'm glad we met with the specialist and that I'm at least informed. It makes things scarier but not knowing is always worse.   

Half Way!!

Three weeks ago Ave went in for treatment and the doctor told us she is officially half way!! We are thrilled Ave is doing this well and has continued to respond to the medication she is on. 

In between treatments we ended up going to Priest Lake in Idaho and Ave absolutely loved being there. It was so nice to have a break and to just enjoy the family. We went boating, canoeing, made s'mores over camp fires, and did a lot of playing on the beach. The trip went too fast and after being home just a week we had to go back in for another treatment.

This is Elliot Therapy Dog and his owner. At the center they have therapy dogs go around to cheer up the kids. We get to see Elliot almost every Friday and Ave loves him. He is so sweet and his owner will tell him to "pray for Avery" and he will put his paws up on the chair and bow his head. 

Ave is usually so good natured about going in but has started to say little things that make me feel like she is much more aware of what she is going through. She's started to say "doctor hurts me" and "I don't want medicine". It really sucks but I just keep telling myself that it is helping her. This time the doctor prescribed another medication that she will start taking every Monday and Tuesday. It is some kind of antibiotic that prevents a type of pneumonia that people who take steroids over a long period of time can get. It's been pretty easy to keep track of all her medications because she only has to be on oral medications the five days after her chemotherapy. I just feel so lucky that she doesn't fight me when giving her her medicine anymore. 

We have been talking to our social worker about referring Avery to the Make A Wish organization. One of the qualifications is that the child has to be at least 2 1/2 years old. Ave will be 2 1/2 on August 17th and I can't wait to get that going. Everything she says lately has something to do with the princesses. We watch a lot of Curious George and anything that he does, she wants to do too. The other day she asked me for a flashlight... but it had to be a princess flashlight. Or a princess boat, or a princess camera. After talking about it with Thomas we've decided that a trip to Disney World would absolutely be the best thing for her. I cannot wait to see the look on her face when she gets to meet Ariel there. She is going to be in heaven!

What treatment is this?

On the 14th Avery went in for another chemo treatment. Everything went smoothly as normal. We love the staff there because they are sooo great with Ave. They have a ton of toys for her to play with and we always end up seeing a few friends up there.

When Avery first started treatment, the staff told me about their Colors of Courage program. If you choose to participate, your child will get a certain colored bead for everything they do during their treatment. At first I didn't think it would be appropriate for Ave because she's so young, but now I think she will love having it when she is older. I've said over and over again that her age is a blessing because I don't think she will remember much about this when she's older. This way she can know exactly what she had to do and how strong she was! Each bead represents either a port access, a course of steroids or test she has to do.

Usually after her chemo treatment we take it easy the rest of the weekend because she is on steroids and is usually pretty cranky. But we weren't so lucky! On Saturday afternoon Avery was acting really cranky and was super clingy. I was just holding her and watching TV and she started feeling really hot. I took her temperature and she was completely normal! I guess my mom instincts kicked in because I definitely felt like something was wrong. For the next hour I kept checking her temperature and it slowly kept going up. Since Avery has a central line we had to take her up to the ER right away. By the time we got there her fever went up to 104! 

As soon as we got into the room about 10 different people came in. She was already crying and upset from feeling so crappy and this made her sooo scared. The doctor started talking to us and telling us what they were supposed to do but we couldn't even hear her because of Ave's crying and all the people in the room. Finally everyone went out except the nurses that were supposed to access her port. Normally when they access her port before chemo it takes less then two minutes. This time Avery was so upset and scared and they decided it was a good time for a student to come in and practice on Ave. I know everyone has to learn somewhere but I just felt like it wasn't a good time for someone to be learning. It took her over 15 minutes just to access her port! 

Finally they gave Ave some antibiotics and some tylenol to bring her fever down. She started feeling a lot better and calmed down. The ER doctor basically told us that if it's a bacterial infection we would be up there for days to get antibiotics. If it was a virus, Ave would have a fever for the next 10-14 days. After being there for a little over four hours they let us go home. The next morning Ave woke up FEVER. FREE. Not sure what was going on to make her temp go up that much but we were just so grateful that she felt so much better.

Another MRI

Here I am playing catch up again. Avery has now had 11 chemo treatments and is doing better then ever. Her counts are up and she is feeling pretty good. Her counts being up always makes things much easier on all of us. Not being able to go outside during this warm weather would just suck. 

These past few weeks leading up to her MRI have been really awful for me. The first MRI was only stressful the day of because we knew Avery was responding to the treatment she was on. It was easy to know because we could visually see her tumor shrinking. It had been so large and you could see it on the outside of her head. So when it got smaller we knew she was responding. Now we can't see it and I was terrified of hearing bad news. I'd learned my lesson not being worried the first test Avery went in to get and got a big wake up call. 

Her MRI went surprisingly well. At clinic when they told me they were scheduling it I begged for them to make it earlier. Our last few tests were much later in the afternoon and it was almost unbearable not being able to feed Ave. So they made it for 6:30 AM. I was suuuper happy because I was able to just get Ave up and go right then. My sweet mom came even though it was so early and was a huge help. Everything went well and she even woke up really well which is usually the worst part. After we got home she wanted to right to sleep and when she woke up she was completely back to normal.

The next morning was a Friday so we headed up to get a skeletal survey. These haven't been the best in the past because they don't sedate her and have to hold her down while taking the x-rays. Usually Ave cries a lot but holds still. This time she was screaming and shaking and kicking her legs. It was completely awful. She recovered pretty fast though. Here is a video of her waiting to be checked in and she's reading an animal book and making all of the noises :)

When we went to get her chemo she cried for the first time while her port was accessed. To give you a visual... They come in with this big tray full of tools to access. Then they take off this tape that is holding on numbing cream over her port - this in itself is enough to put kids over the edge since it's like pulling off a large bandaid. Then they take a needle that is connected to a tube where they can draw blood and pump her chemo into - and push that directly into the skin. I've personally never been able to watch because I'm not good with needles, but I think it would be scary for anyone to have a needle coming straight at your chest. In the past she has been completely calm and just watches but I think the skeletal survey kind of threw us off our routine.

While at clinic we got the results of her MRI and skeletal survey saying that Avery's tumor is still shrinking and that the bones that were affected by the tumor are even healing. It was a huge relief for me!! :)

By the end of her clinic visit I was SO READY to just be DONE with tests and being at the hospital. It really made me so grateful that we could go home! There are other kids up there that have to be inpatient for their chemo and have to stay for really long periods of time... weeks even.

Since then we have had a lot of fun spending time at the zoo, park, and at grandma's house!

Can you tell she loves being outside??

When will I wake up?

I hate Friday's. Kinda weird since I used to love them. I just feel like crap...like I'm in a nightmare and can't wake up. Avery's 10th appointment went just as planned and she was as good as she always is. We had a 4th year medical student come in to see her today and review her case. Talking about it always makes horrible memories come up.... which is why I say everything is "good" when people ask.  But how "good" can things be really?

It's so easy during maintenance to kind of forget what's happening. And then right when you feel like things are as normal as they can be you get slapped in the face again. Every three weeks it seems like I'm stressing about something new.. whether her counts are up, or when the next MRI is going to be, or how much sleep we are going to get while she's on steroids, or if her having a bad fall everyday is because of her treatment or just hoping that she is still responding to treatment.

I know we have it good. I know Ave doesn't have things as bad as some other kids that have to be in-patient for their treatment, or tons of other tests every time they go into clinic.... in fact I thank God everyday for how lucky we are that she has what she does have, but this doesn't make it ok or better for us. What two year old has had more radiation tests then some 80 year olds? Or who will be sedated almost ten times before her 3rd birthday?

I'm so sick of people trivializing what she's going through. I'm sick of hearing "oh all my kids acted like that." Or "that's probably just her personality" Or "oh you can't even tell she's losing her hair". How could anyone know what she's going through when they aren't there for every single test, needle poke, steroid pill, or poison injection??

Nothing about this is pretty.  I just wish it was over.

Catch up....

I wrote this post after Ave's last treatment and never posted:

We just got home from clinic. Avery did well as she always does and we are done with her ninth treatment.

We've had a good two weeks of no chemo and no steroids. I've love being on maintenance. It's been so nice to have small breaks in between clinic visits. We have been spending a lot of time at Grandma's house and playing with cousins. And we've been taking advantage of the nice weather! We have a small park down the street from our house and Avery asks to go every. day. And then screams when we have to leave. It's been good for both of us to get some sunshine and fresh air.

I'm feeling especially emotional this week for a number of reasons... gratitude that she is responding to her treatment and is doing so well with it, overwhelming love for my little girl who has not had one word of complaint come out of her mouth, and this was the first week I've really noticed a big different in her hair loss. Her hair doesn't fall out evenly so you can only see it if you lift up the top layer of her hair in the back. I'm terrified to brush it or even wash it.

I'm becoming so much more aware of the cancer community. Cancer is everywhere. Just a few weeks ago I was at the yarn store (knitting is a new hobby I've picked up) and started casually talking with a lady who was there. Somehow we got on the subject of cancer and she told me that her son was just diagnosed. He is older and is a father of three kids. Equally as unfair. But I guess if the world was fair then a lot of things would be different...  and I would've never known that we were going through the same thing by looking at her, we probably have nothing more then knitting in common and yet we had an instant connection. No mom should have to go through this. Every time Ave has to go in for chemo, or an MRI, or take a steroid pill.. I wish with all my heart that it was me doing those things. I know there is nothing I can do to change it and I'm trying to make the best of it.

Quiet

It's been really quiet over here lately. Since Ave was neutropenic there wasn't much to post about being inside all day everyday. We went in for Avery's 8th chemo treatment last Friday and her ANC is back up to 2400. HUGE improvement from last appointment and we were so happy. We spoke with the doctors and Ave will most likely be in maintenance for the rest of the year. Going in every three weeks for chemo and then is on really high doses of steroids for the next five days. This time around I didn't notice Avery's appetite change until the last day she was on steroids but did notice her irritability and insomnia. We have been up late quite a few nights and up super early. It makes it hard on both of us because I am one of those people who needs at least eight hours of sleep a night or I get super cranky. :) 

This week we celebrated Avery's ANC going up by taking her out to lunch and went to a dinosaur museum. I think Ave was a little disappointed that it was nothing but bones lol. There were a lot of good things for little kids to do but it was a Saturday and super busy so I was a little worried about her getting sick.

Since then we have been just enjoying the sunshine and the good weather.

We actually got to go to church for the first time in a while.

Ave's hair has been falling out really unevenly so she has a big bald spot in the back but still has enough to wake up with this :)

6th, 7th treatment and MRI results

I feel really awful about not posting at all for so long. We went in on February 28th to have an MRI of Avery's tumor. I was kind of terrified because of the horrible experience we had last time. Thomas and I said so so many prayers that it would go smoothly. I was already frustrated because they scheduled her at 12:30. So we spent the entire morning with no food. She did amazing though. It was like she didn't even feel her hunger. When we got there she spent an hour getting fluids and watching a movie on my phone. All the nurses were so amazed at how good natured she is. She never cries while she's getting her port accessed. It's become totally normal for her. 

Last MRI she had she woke up early and was just hysterical. She didn't respond well to the medication and was so upset for over 2 hours and then was dizzy the rest of the day. They switched to a different medication and she did so much better. She was starving when she woke up and probably ate about 10 oreos :). When we got home she went to sleep for a few hours and woke up completely fine. 

I was kind of a nervous wreck waiting for the results. At the beginning of all of this when we went in for her first CT scan I thought at the end that that was going to be the worst part. I thought it was all over and I got a big slap in the face later that day with the results. Of course, we were so hopeful that her tumor was responding to treatment because we could see on the outside that it was smaller. When your child has cancer it seems like you are always expecting the worst. 

We went in the next day to get a skeletal survey done, to get the results and see what our "game plan" for the next six weeks was going to be. Our doctor told us the MRI results and Avery's tumor is DEFINITELY SHRINKING! It now measures 3.2 x 1.3 x 1.1 cm. Since it was such a large mass to begin with the doctors said that they didn't expect it to be gone. Avery's ANC (immune system counts) have been slowly decreasing for the past six weeks. A normal person's ANC is usually around 5,000 and this last week Avery's counts were 430. This is the first time she's every been neutropenic and I had no idea how to handle it. I had to wipe and lysol everything in our house!

Avery is now in "maintenance". So for the next little while she will be going in every three weeks for her chemo and then be on really high doses of steroids for 5 days afterwords. We are absolutely elated that she is responding well to her treatment. Every time I go up and see all of the other kids going through this I am so so grateful that Avery has what she does. There are kids that have to go up and stay for days to get their treatment and we get to go up for a few hours and then come straight home. We are so so blessed that she has such a positive prognosis. 

So for the past two weeks we have been staying inside our home all day everyday. We couldn't have any visitors. If Avery got sick and got a fever at all while she is neutropenic she would be automatically admitted and have to stay at the hospital until she had no fever for 24 hours. I've tried to make it as fun for her as possible while being locked up.

Avery snuggling in her mermaid nightgown that she wore for about 4 days straight. 

Avery and her cute friend Koy. They are both getting chemo and sharing their toys! Every time I see them together I want to cry! They are so sweet with each other and we are so so grateful Avery has a friend up there.

Avery in another Mermaid shirt she didn't want to take off!

All bundled up! First day in months that it's been over 50 degrees and we had to take advantage. We just went outside to watch the garbage truck drive around. Yes we are THAT bored! :)

Making cupcakes. Avery loooves frosting! :)

5th Treatment and Birthday

This last week has been a crazy one. I had family come into town, Avery completed her 5th treatment, and we had her 2nd birthday! Her 5th treatment went well and we got her tentative "plan" for the next month. Next week we will go in for an MRI or CT scan of her tumor to see how it is responding to treatment. If everything looks like it is responding well Avery will go into "maintenance mode" - which means she will go in for treatments every few weeks and her doses of medication will go down. So far Avery's face has seemed more and more symmetrical each week. I can't wait to see how her tumor is responding on the inside.

Then on Saturday I got up early for my first newborn session since Avery's diagnosis. Major panic attack since this was this first time I was leaving her! Right after we had Avery's mermaid party. I have been planning this party for MONTHS and I was so excited and happy with how it turned out.

Her mermaid cake - This was made by a family friend who does wedding cakes.

Food table - It had Hawaiian punch, cake, candy in jars, mermaid cookies, and fruit. 

My sweet girl in her mermaid outfit! She was so funny because I've had this outfit for months and she would never wear it. She'd always say "I don't like it!" But she wore it the day of her party! Of course, she took it off the second the party was over. :)

Sugar cookies from http://www.etsy.com/shop/SugarMeDesserterie

Avery practically BURIED in her presents. Luckily she had her cousin there to help open them all. 

- A lot of them were from out of state friends. Thank you SO MUCH! They made her so so happy.

Avery was so proud of herself for blowing out the candle. I love this picture of her and her daddy. :)

I'm still a bit in shock that she's already two! It seems like it has gone by soo quickly and that so much has happened since she came into this world. To think that I was only a teenager with no worries only a few years ago just boggles my mind. I can't believe how much Avery has changed me for the better in just 2 short years. It's crazy how much becoming a mother changes your perspective on life. Every choice I make I think of how it will affect Avery. Honestly, I've felt like for the past two years I've spent every waking second trying to protect Avery from the outside world. You can imagine how I felt when we were told that she had a tumor. I was so angry that this was something I couldn't protect her from. There were no preventative measures I could've taken, nothing I could've changed, and nothing I can do now but hope that she beats this. We have been so blessed with so much support and love and all we can do is be there for Avery and let God take the reigns.

Roller coaster

These past few days have been an emotional roller coaster for me. Yesterday we went in for Avery's fourth treatment. Things are progressing at an amazing speed and she has adjusted so well. I asked her in the morning if she wanted to go to the doctor and she just looked at me and said "uh huh". I'm so baffled that the hospital isn't a scary place for her. She walks in with such a good attitude, we go up in the train elevator and she names the paintings on the floor on the way to the oncology clinic. We wait in the room and she plays with her doll all the while people are poking her, checking her temperature, accessing her port, taking blood, more poking, giving her the chemo. And this is just normal to her. It's an answer to my prayers that she is used to it... but at the same time I hate it. I hate every second. She has barely lived and has already experience more then some people who are much older. I can't explain this to her or why she's different. I don't even know if she knows she is different. This has become her new normal.


I am absolutely elated that her tumor has gone down so much. I am so hopeful that this means she is getting better and that this won't be a forever thing. The steroids are the worst part because it made her so irritable. The chemo seemed to have no affect on her until yesterday when I had to take her pigtails out. I am always so careful taking out the elastics to not pull her hair and when I did take them out a lot more of her hair came with it. I don't think she will lose all of her hair... but she's losing her hair just the same. I'd gotten into such a routine and Avery was acting completely normal that I'd forgotten things weren't normal. Another bump in the road.


Yesterday at her appointment we got her "Colors of Courage" necklace. This a program where they give the patient a bead for each test, clinic visit, port access, and other things like that. Isn't it shocking that it has barely been a month?

This past month my sweet, sweet neighbors have been organizing an auction for us. They have gone around to all of the businesses in our area asking for donations and there have been many people who have donated also. This morning the auction was held and I was so touched by the amount of support people are still giving us. We are so so so grateful for any donations people give, but this was never about that for me. Just knowing that people are there to help and love and pray for us is more then I could ever ask for. I don't think that it's just luck that Avery is responding so well to medication and adjusting to this new routine. I feel like it's everyone who is praying for her. Seeing the community come together for our family was such a blessing. It's kind of restored my faith in humanity. :) I'm so grateful for all of the friends, family, and complete strangers that have been here and have offered to help. I've read every single text, facebook message, comment, note and appreciate them so much.