Last Treatment

Avery had her last treatment on January 17th. We got up early early early that morning to get up to the hospital for her MRI and skeletal survey. I was so rushed and had to pack so much I actually forgot the cake I was going to take up to the hospital for the staff in the oncology clinic! Once we got all checked in, the nurse came into the waiting room and got us. It was really special because we got the same nurse that we had at Avery's very first CT scan. She remembered us and she was so great with Avery.

They did all the usual things.. took her weight, temperature and height. Once we got in there I took of her shirt so they could access her and realized the numbing cream I had on her port wasn't really ON her port. I used Glad press and seal to hold on the cream but she threw quite a fit while getting her shirt on so I think it moved. She got accessed and really screamed because the port site wasn't quite numb. I felt awful. :( The sweet nurse went and got a huge chest full of toys for Avery to pick one. She ended up picking The Avengers action figures!! A little weird for a two year old girl if you ask me but that's what she wanted! :)

They were behind in imaging so we ended up waiting an extra hour to get into the MRI. Avery went to sleep really easily and they took her back. I'd explained to the nurses that Avery metabolizes the medication really quickly and has woken up every single time in the middle of the scan so they took the machine in with her and keep the medication going. It worked like a dream and she stayed asleep!

I'd also requested that they wheel her right in to do the skeletal survey while she was still sedated. In the past, the skeletal survey has been the most traumatic for both Avery and I because they have to hold her down while she's naked on a cold, hard table. This time, they kept the medication going and she got to sleep through the entire thing. I was so grateful to have her asleep for it!

Image from the skeletal survey and waking up in recovery

My cute sister works close to the hospital so she got to come over and hold Avery while I ate lunch. We went up to clinic so we could get her last chemo treatment and go over the results of the scans with our Oncologist. Avery ate some cheetos and almost immediately fell asleep. She even continued to sleep through getting her chemo!

I talked to the doctor and she said that the results were all good news. Avery is completely disease free!

The nurses are so amazing about making it a big deal that they are done with treatment! They made a huge sign for her, sang a song in the infusion room, and they have a bell you can ring when you are officially done with treatment. They also gave her a really beautiful quilt and filled it with a TON of toys for her to celebrate. Avery was pretty much completely out of it by the time we got to the bell ringing and I ended up ringing it for her. The necklace she is wearing is full of beads from the program they do called Colors of Courage. She is only wearing about 3/4 of the beads she has and they each represent something she had to do during treatment.

Once we got home we ate the little chocolate cake I had bought her to celebrate and she played with her toys! 

One Year

I can't believe it's been one full year since Avery has been diagnosed. I remember that day like it was yesterday.. Weird because if you asked most people what they were doing a year ago today, they wouldn't be able to tell you.

I woke up that morning already panicky because I knew Avery wasn't going to be able to eat all morning before her CT scan. She cried ALL morning and it was miserable for both of us. I didn't feel like I could eat in front of her so we were both starving by the time we got up there!

When we got checked into the hospital they had me sit in a chair and hold her really close so they could start an IV. They had one of the Child Life Specialists blowing bubbles to distract her. I remember I started to feel sick (I don't do well with needles) and was waiting for her to start screaming. They poked her and she let out a little gasp and then relaxed and kept playing with her bubbles!! I thought this was definitely going to be the worst part so I started to relax after. Once we took her into the scan room she looked SO small next to that big machine. They told me over and over again that they were going to have to put her to sleep to do the scan but even after they had strapped her onto the table she was being so still. They brought out some toys and books and I got to stand by her and distract her instead of putting her under! I was SO proud of her!

Here she is standing next to the CT machine

They sent the scan over to the EMT that we had seen and he called us at the hospital to talk to me. He offered to come to our house or we could go to his house to get the results. He is a good friend of my in-laws so even then I didn't think it was weird that he wanted to give us the results in person. Looking back at it now, I was pretty stupid to think that everything was fine.

After she was done I felt so relived I decided to take her to a McDonald's play place. Normally, we avoided those places because I was always afraid of her getting hurt but I knew she would have fun. As I sat there watching her play I kept thinking, the worst part is over!

That night we got in our car to drive over to the doctors house. It was snowing so hard and took us a while to get over there. Once we did he took us into his front room and told us that the mass in Avery's head was a tumor. He told us several different things but I remember feeling like cotton was shoved in my ears after I heard the word "cancer". I couldn't think and all I could do was stare at my baby thinking I was going to lose her. I couldn't breathe or do anything but sob. I remember the doctor telling us we would meet with an Oncologist in the morning to discuss treatment options.

That night, we had both of our parents there to read the CT scan results and to see Avery. She of course, was ecstatic to have so many people there to see her and had no idea that something was wrong.

I used to define everything in my life by when Avery was born and that changed the day she was diagnosed. I can't believe how much one day can change your life for the better and for the worse. I can honestly say that so many good things have come from this. I have learned to love another person more then I ever would've thought I could. I have learned to be more compassionate then I ever thought I would. I have seen more people do more good for us then I thought was possible!

I hope that even though Avery will probably not remember this that she will use this experience to educate more people about this awful disease. That she will be able to love more deeply, forgive more easily, be more compassionate, and live life to the fullest. I know I will.

Make A Wish

Here I am again. It's been so long since I've written and a lot has happened. Avery has continued to get her treatment every third Friday and as far as we know she has continued to respond to it. Not that long ago our main doctor went on maternity leave. The problem with the clinic where Avery sees her doctor is that most of the time we don't see her regular doctor. It has been really frustrating to go in and see someone different almost every time. It makes me even more frustrated that we weren't assigned the specialist in the first place. You would think that if someone is a specialist in LCH that we would be assigned to them when Avery was first diagnosed but we never were.

When our main doctor went on maternity leave, the fellow we see told us that we would "whichever doctor was there" when we came in. That wasn't ok with me. This journey has already been so unpredictable and I felt like I couldn't handle any more inconsistency. I requested that we switch to the specialist and was told that I couldn't because of "residential learning". I don't think I've ever been more angry. I was being told we couldn't switch doctors - that my daughter couldn't see the best - because the resident who has been following her case needed to learn. That was so backwards to me! I kept feeling like they were more focused on the doctors then on patient satisfaction. I was given the run around so many times and was never able to talk to the person I wanted to. Finally, the specialist and our current resident said that we could talk to them about the "pros and cons" of switching doctors when we went in next for Ave's chemo.

Once we got there they were very understanding to our situation and the resident we had been working with told us how much she loves Ave and would love to keep working with us but if we really wanted to switch that we could. We agreed to stay with our current doctor until the end of Ave's treatment and the specialist agreed to see us regularly if Ave happens to relapse. The specialist also talked to us for almost 2 hours afterwards answering all of our questions and Thomas and I felt so much better about everything. We do know that Avery has a high chance of relapsing but the specialist said that he's almost never seen it get worse - that is a blessing! One thing that is very discouraging is he said we are never really "out of the woods" with this disease. I've heard a lot of different things, one of them being that children essentially "grow out" of the disease by the time they are 10 but the specialist says otherwise and I have met a few adults who are still dealing with it. Hopefully, this will be it for Avery and we will be done after her treatment.

On another good note, they will be pushing back her tests another month. Normally, every three months we are expected to go in but the doctor told us they wouldn't change any of her treatment even if her scans did look different.

Here we are at her appointment. Clinic is great because they have SO much for the kids to do while they get their chemo.

Avery got croup over thanksgiving and we ended up in clinic for a fever. Every time she's had a fever we've ended up in the ER and we had such a better experience this time! It was early enough in the day that we could go to clinic.

Another exciting this is that Avery has qualified for Make a Wish! When our social worker first referred us, I really didn't have any idea what to expect. Avery has been SO spoiled by them! We first got a packet in the mail with a special key in it explaining that we needed to bring that key to open the special wishing room. When we went to the wish building they had a special plaque type thing with a large star and Avery's name on it.

Next they took us upstairs to play the wishing game. Before we played they gave Avery this cute bag full of toys for her! There was a Make a Wish coloring book, crayons, a princess movie, a bike bell and tassels, and a Make a Wish barbie! I thought that was so cool I wouldn't let Avery open it. It's stupid because she will enjoy it the most now but I just kept thinking… How many people have a Make a Wish barbie?? That is not something you can buy. :)

 Avery was really too little to get it so they asked her four questions. What do you wish to be, have, go, and see. And guess what she said to all of them?? Ariel. That was her only answer! So we filled out a paper with two wishes her first and second choice. They have you do two different choices in case the first choice isn't approved by the board. Next we got to write down something we wished for Avery and to put that in the wishing room also. 

Then Avery got to go to the special tower and open up the wishing room with her key.

The wishing room wasn't working when we were there, normally it is all lit up with different colored lights but when you walk in there is a waterfall and a cone type thing in front of it. Avery went to the back to get the top of the cone and put her wish in it and then walked around the waterfall to get to the cone so she could put the top on into it. After she did that we all read our wishes to her and took pictures.

It takes about six week for wishes to be approved but they called us after four and told us we were going! I was so excited! We got to plan a swim party for Avery to tell her that we get to go. It was so fun and Avery absolutely loved it!

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!