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

Second Treatment

This last week Avery caught some kind of virus that gave her diarrhea and the worst diaper rash she's ever had. This has been the worse for her then any of her tests.Thomas was sure that she had an intestinal infection so we took her in to the doctor on Thursday to get tested. Luckily it turned out to be just a virus and she is getting better.

Avery is getting so much better at taking her medicine. We now just crush the pill and put it with her liquid antacid. She is definitely suspicious of any food I try to feed her though! Anything I bring out she makes me take a taste first to make sure there is no medicine in it. The side effects have kicked in. She has been eating at least 5 meals a day and has started swelling in her cheeks and her belly. She's been very irritable so things that normally wouldn't bother her do. She's also VERY clingy. Which of course I don't mind until I have to go to the bathroom or shower. I was not a patient person before this and  I'm learning to be.

Friday afternoon I took Avery in to her second treatment. Her appointments are always scheduled around 11 and her nap time is usually 11 or 12 so I'm usually pretty worried that she will be more irritable. She did so so well. She held perfectly still while they accessed her port and didn't cry at all this time. The nurses were shocked at how good she did for it only being her second time. She never ceases to amaze me.

When the doctor came in she felt Avery's tumor and said that it was definitely softer. A few days after her first treatment I thought that her tumor felt more spongy and was smaller but I didn't know if I was being crazy and just wanted to badly for her to respond to the treatment. Especially since they said it would take a few weeks for the tumor to start shrinking. I'm really hopeful that this means she is responding to the treatment. I will take all of the side effects a thousand times over if this means she is getting better.

Our days now consist of watching a lot of Curious George, making pillow ramps, eating popsicles, and lots of snuggling and on Friday's we go in for treatment. I'm so so so lucky to be this girls mommy!

Avery at her 2nd appointment. She has such a good attitude whenever we are there! You can see her tumor on the left side of her head right by her eye. 

I have been more and more amazed every day at the love and support we are getting. I feel like God is hearing everyone's prayers and that he is definitely working overtime for my sweet girl. Thank you all so much for thinking about us and praying for her. 

Side effects

These past few days have been rough. Avery did so well with her treatment on Friday and was completely fine on Saturday so I had a big slap in the face Sunday afternoon.

She has been on Prednisone - a type of steroid that she is taking twice a day. It tastes horrible. We've gotten to the point where I have to hold her down while Thomas shoves it in her mouth. We've tried mixing the liquid with root beer or orange juice, then getting flavored liquid, then getting the pills and crushing them in pudding, yogurt, ice cream... anything. I actually inhaled some of the powder last night and the taste in my mouth wouldn't go away for almost an hour. It's awful. I just have to sit there and think that a few minutes of crying is so worth it if it helps her get better.

Side effects of prednisone are intense hunger and irritability. There are more but these are the ones Avery has had the worst. I have to make sure she eats at least everything 2-3 hours or she has these fits that last at least a half hour at a time. These are the worst because she is inconsolable. She'll hit her head on the ground and kick me. It's so hard because I don't know where Avery stops and the Prednisone begins. Sometimes I want to scream or put her in time out but how can I discipline her for being sick?

I've been trying to keep things as normal as possible and I keep getting wake up calls that things are so NOT normal. We went on an outing the other day and it turned out to be a disaster. I was so worried about her getting a cold or getting hurt I couldn't enjoy anything. Not to mention people kept coming up to see the "sick girl". I hate that people know her because she's sick. Why does this have to define her? It doesn't to me. She has endured so much already and will continue to fight probably the rest of her life. The whole way home I just sobbed. I feel like I will never get used to this. I will never stop feeling like this. I don't think it will ever get easier but we will both get into a routine eventually.

One blessing to being in this "world" is that I feel like my heart has grown x1000 for people going through this. I feel like this will make me more compassionate and aware and hopefully give back in the future as much as people have given my family. I feel like I will never look at life the same way again. Everything I cared about before this trial seems so trivial and... stupid. This will help me live life to the fullest. Appreciate the little things that much more. Love Avery with all of my being and know that there is nothing more important I will ever do then help her fight and WIN this.  

My princess :)

First Treatment

Friday morning we had an appointment with the oncologist to find out the rest of Avery's test results as well as what type of treatment she would have. Our families were anxious to hear the news from the tests and met us up in clinic. We met with a doctor who told us that all of Avery's organs look normal! She does have what looks like one other tumor on her scapula but the chemotherapy will take care of that. This means that Avery will be able to have "out-patient" treatment.

LCH is prone to coming back if you don't get treatment for at least a year. Avery will be on chemotherapy called vinblastine as well as a significant amount of steroids until almost her next birthday. She will get a little nausea, irritability, intense hunger, as well as swelling and weight gain as side effects.

Avery right before we left for her first treatment. You would never be able to tell she is sick. 

Avery the night after she got her treatment.

Avery handled her first treatment so well and has even started to make friends up at the hospital. It was the first time her port was accessed and she freaked out a little bit over that (I did probably more than her) but she did awesome. I was so proud of her. After she was released we got to go home and all of us took a much needed nap.

I'm so overwhelmed at the outpour of love and support there has been for our family. Some photographer friends of mine were so sweet and sent Avery a few packages yesterday. One was FILLED with mermaid toys. Her favorite disney movie is The Little Mermaid so the smile on her face was huge all night.  I can't thank you all enough for everything you have done. Your prayers have helped Avery as well as me stay strong through this.

This little movie is her going through her mermaid toys. It made me cry seeing her so happy.