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. 

Week Three

This week has been better. Things have finally started to settle down and we are getting into a routine. Avery has been taking her medicine a lot better and I'm getting better at dealing with the side effects. Avery's belly and cheeks have gotten so swollen and she is definitely gaining weight with all of the food she's been eating.

We went in for Avery's third treatment on Friday and she did so well. The oncologist is really pleased with what she can see on the outside. From what I can see, Avery's tumor has already shrunk about half way. She will go in for an MRI in three more weeks to see if her tumor is responding to the treatment on the inside. No matter the result, Avery will be treated for a year but I'm so hopeful that with her tumor shrinking that means she is responding to treatment really well.

I feel like she is such a miracle. All of the doctors that have seen her are amazed at the progress she has made so far. Before she started treatment they told me that it would take several weeks before her tumor would even start to show signs of shrinking. Within days of her first treatment her tumor started to feel softer. I didn't say anything because I felt like I was being crazy! Not only has she responded so well, but she is adjusting so much better then I could have ever hoped. I feel like our prayers have been answered in the way of her being so calm during her treatments and still being my sweet, sweet little girl. She is so smiley, energetic, sweet, and snuggly. I'm so so grateful that she has adjusted so well.

Watching Curious George :)

Eating apples and blue sixlets. Can you tell she loves chocolate? :)

More snuggling right before bed