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 :)