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.

News

Had an MRI today. I woke up early again when my husband Thomas got up for work because I couldn't sleep. Still so much worry. Waiting for test results has been almost unbearable. Luckily, I was watching my sweet niece today who is almost Avery's age and that really helped keep my mind off of things. I was a hard morning anyway because I couldn't feed Avery before her MRI. It's awful when she's crying and wanting a banana and I can't give it to her. I can't explain to her why I'm doing it either.

About an hour before we were supposed to leave I got a phone call from one of the doctors saying they got the biopsy results back. Avery has been misdiagnosed. She has langerhans cell hystiocytosis. The doctors are shocked that this is her diagnosis because of how destructive and fast growing the tumor on her head has been. This could be very good news because of two reasons. The recovery rate is about 10% higher and it takes lesser doses of chemo and radiation to treat. Treatment will still last about a year, but she will be able to take steroids at home for part of her treatment. We don't know yet what types of side effects she will or won't have.

The downside to this diagnosis is that it can be more dangerous then some cancers in that it sometimes affects vital organs. Avery will be getting more tests this week to make sure her kidneys and liver are working fine and that she doesn't have more tumors on her legs - since these type of tumors grow on the long bones of the body. Doctor says that if her organs work fine she will have "out patient" treatment. We are praying that no organs have been affected and that we caught this early enough so no other tumors have had the chance to grow.

After hearing the news I was in shock. I still am. I'm not sure if I should jump up and down or feel even more worried. Her MRI went horribly. Both of her hands had been bruised from IV's so she had to get one in her wrist. The vein was much deeper and it hurt her so much. I don't think she's ever cried like that. It was the most awful feeling having to hold her while they were putting it in. Even after the MRI she woke up earlier then she was supposed to. She was so confused and upset and she was inconsolable for over an hour.

Avery and her dad before the MRI

Photo taken of Avery right before she was awake from her sedation

She has been so strong through everything else that I guess I unconsciously began to expect she'd be that way through the entire process. It was so hard seeing her cry like that. How could I just sit there when everything in my being told me to take her away and protect her? I don't think these things will ever get easier. She is so innocent it just seems so unfair that she has to go through this.  I'm praying that she doesn't have more tumors. I'm praying that her organs haven't been affected. I am now praying  that I can be strong for her.



    

Waiting

This weekend would've been completely unbearable if it weren't for family, friends and others that are showing their love and support. We are still waiting on her tests to come back to know whether or not the cancer has spread. She will have an MRI and a bone scan this week so we can find out if she has other tumors and to get a more detailed idea of the tumor she does have.

Avery has been doing well. Running around, laughing, giving hugs and kisses, and being her normal self. This alone has been a huge blessing for me. My heart breaks a little more every time I hear her say "it hurts" or flinch, but seeing how strong she has been helps me know that she will be that way through this entire process.

This is Avery the day after her operation. 

Her age and blissful ignorance has proven to be another blessing during this process. She seems to have no memory of her surgery or tests and has bounced back faster then I could've ever hoped. Articles I have read say that children can withstand chemo so much better than adults so she will be able to have higher doses of chemo. Her oncologist also says that there are new medicines that will help with the nausea she will most likely get during her chemo treatments.

We want to thank everyone who has called, texted, emailed, or just simply donated. It helps so much to know that Avery has people all over the world praying for her. We know it is helping with how upbeat and happy she is.

Day one

1/10/13

After a month of going to doctors, antibiotics, constant bleeding from Avery's ear, and worry I knew something was wrong with Avery. She has had a swelling on her face since the middle of November and what we thought was a ruptured ear drum. After she wasn't responding to the antibiotics we took her to Matt Dahl, an ear, nose, and throat specialist. He told us there was a tissue mass in her ear and we needed to get a CT scan to see what was going on.

Phone picture of the swelling on Avery's face. Taken November 20th

The morning of the 10th we woke up early so that I could feed Avery solid foods and her stomach would have time to empty before her CT scan appointment at 12:30. When we got there Avery found a pink car they had in the waiting room and immediately fell in love. We had to wheel her in the car from room to room because she wouldn't leave it! I was so nervous about her getting sedated and getting an IV. The nurses came in to give her the IV and she didn't even cry! We took her to the CT scan room immediately after and she laid right down and held so still for the entire scan. I was so proud of her and the nurses were shocked that she didn't need sedation. We set an appointment with Matt Dahl that night to find out the results.

After the CT scan I was honestly relieved. I thought that the worst part was over. We went to McDonalds to get french fries and ketchup (her favorite food) and play in the play place. She was so happy and smiling I just didn't know how anything could be wrong with her.

That night Matt told us that the swelling on Avery's face was a cancerous tumor. She would face chemo and radiation therapy. I felt like the rug was pulled out from underneath me and couldn't stop falling. My worst nightmare had come true. My Avery is the sweetest, kindest, happiest, most beautiful girl and I couldn't understand how this could happen to her. I still don't. Knowing that she will go through so much pain is unbearable.

1/11/13

 Avery the morning before seeing the oncologist.

We met with the Oncologist to get all the information we could about Avery's cancer. We knew she had to get a Biopsy to see what stage of cancer she is in and exactly what type it is. We couldn't feed her all morning but she was so good natured about it and went around playing with the other kids in the clinic and with the play kitchen there. We tried to coordinate all the doctors so that we could get her tests done as soon as possible and start treatment. Around 3:00 PM we took her to the operating room. She was so tired (waaay past nap time) and starving so the doctors gave her some medicine so it would be an easier separation from us. As soon as the medicine kicked in she threw her head back and got the biggest grin on her face. I was so happy she wouldn't remember anything afterwords.

In the operating room, Avery got a biopsy through her ear, and lumbar puncture to see if the cancer has spread into her spinal fluid, a bone marrow extraction as well as a port put in. A port is a permanent IV that is on her chest under her skin.

When the doctors told us she was awake we ran back to get her. She was so confused, scared, and upset. This is when everything became so real to me. I would need to be her rock. I would need to be there for her no matter how much pain she was in and no matter how scared I was. It was so hard   seeing her in pain and I wished I could go through it for her.    

Last night she was up very late because she was hurting. Finally I took her in to sleep with me. This morning she woke up smiling and was completely her normal self. She has been running around, laughing and playing all morning.

Avery this morning saying "CHEESE!"

This is her permanent IV. 

Avery playing with her kitchen

Now we will wait to get all the results from her tests back. We are praying that the cancer hasn't spread and they will be able to direct the radiation therapy right at the tumor.

I am completely shocked at the love and support we have gotten from family, friends, and even complete strangers. I know nothing of this world we are walking into but I know we have many people coming with us. Here is where we will post updates, pictures, and the rest of Avery's journey.