Update and Thoughts

Layla had her very own visit to the hospital on Friday. She was SO excited to be going! We had to be there pretty early so Layla and I went down the night before and stayed in a hotel. I really wanted to take Layla swimming but I didn't know if she'd like it. It has been a long time since we've been to a pool because Annabelle can't swim with her central line in, so this was a perfect chance to take Layla. She was a little nervous the first few minutes but after that she LOVED it. She didn't want to get out of the pool by the end! We had so much fun together. It was just what I needed! Everything went well with Layla's procedure and we're hoping this will bring the end of goopy eyes for her. She has a small silicone tube that you can see in the inside corner of her eye which will (hopefully) stay in for 2 months and then the Dr will remove it in his office. He said it was very obvious that the tear duct had filled back in with scar tissue after the last probing, so hopefully this time it will stay open after the tube is removed. I certainly don't want her to have to have any more procedures done, but let me just say that she is quite entertaining after she gets Versed! :)

And now for a few of the many thoughts running through my head lately...

I have mixed emotions as we near the end of Annabelle's treatment. We are getting close, (only 4 more rounds!) which is very exciting but also a little nerve racking as we head into the unknown. We have been counting down and looking forward to the end of treatment since the day we began, but we don't really know what the end of treatment will bring. I can't want until Annabelle isn't on chemo anymore, but I also fear that the cancer will come back once she stops. I can't stop reading about other kids with Ewing's and researching treatment options for relapse. I just want to know everything I can! I know it's the feeling that I will be in control of something if everything goes out of control again that drives me to want to know more, but that's the control freak in me. I also know, though, that through this trial I am to learn to be more carefree and enjoy each day because I will never know if the next day will bring a relapse.

I believe that Annabelle having cancer was a trial that our family was meant to endure and that it is part of Heavenly Father's plan for us and nothing we could have done or not done would have changed that. But I also personally believe the theory that Annabelle had the genetic make-up to have Ewing's but that there was something that triggered it into action. I would love to know what exactly it was that sent those cells into such rapid production but I know I never will, at least not in this life. However, I have become much more educated and aware of toxins in our environment and foods. I have this desire to want to "go green" to eliminate as many of those toxins as possible. Once again I know most of that is because it is one thing I can control, but don't laugh at me when you see me making my own detergents and cleaners, okay!?! And don't judge me either when you see me drinking a Dr Pepper to keep my eyes open. Josh already thinks I'm crazy because I told him he can't have dessert after every meal and no more sugared cereals! It's easy for me because I like more hearty, grainy like things anyway but I'm sure he's getting his share of sugar in before I move back home. :)

I can imagine that people would think I wouldn't be able to watch movies about people with cancer or read books about it, but for me it's just the opposite. As a coping response to having a child with cancer, I have become numb to many things. I guess it's my minds way of enduring the pain. But as a result I crave things that evoke emotions in me. It just feels so good to feel something, even if it's sadness or hurt. That might sound odd, but I know other people who have been through similar situations will understand and agree. I quite enjoy watching "A Walk to Remember" and crying as I imagine Annabelle having a relapse as someone's falling in love with her. Or "My Sister's Keeper" and being horrified of the thought of a relapse when Layla is old enough to remember seeing things like nose bleeds because of low platelets and intense vomiting. Again, don't judge me, I know I'm weirder than ever now.

What will it be like to move back to MT? I can't wait but at the same time I haven't lived in our house in almost a year. It's been Josh's house (kind of). People will have changed. Things will have changed. (Although you have to understand I am from Drummond, honestly probably not much has changed!) Relationships will have changed. I wonder if kids will be afraid of being Annabelle's friend because she doesn't have any hair. People might favor Annabelle too much and it will only compound the issues we are dealing with of her spoiledness. These are the things that fill my thoughts.

***Check back soon for pictures of Annabelle's Make-A-Wish night! I promise they're coming!!***

Quick Update

I still need to post about Annabelle's wish declaration but my laptop is getting fixed right now so that will have to wait a few days. Sorry! Let me just say, though, that it was amazing!

Annabelle was finally able to start cycle 13 on the 16th of February. It took her 4 weeks to make platelet counts! It has been very frustrating for me to have her delayed so much. We really just want to be finished so we can go back to MT and live as a complete family again. It also worries me, though, because the cure rate has proven to be better with a more condensed treatment time. The standard protocol for Ewing's used to call for each cycle to start 3 weeks apart, but the latest protocol (which Annabelle is on) aims for each cycle to be 2 weeks apart. Of course that is the ideal and the attending last week, Dr Fluchel, told me that nobody makes it through Ewing's protocol without some delays and/or dose reduction. Annabelle has been the unfortunate one to have plenty of both! Of course we want to do what will bring the highest chances of a cure, so in an effort to reduce the length of her delays, they have now reduced her chemo to 50% of her normal dose. It's crazy for me to think that if it works and she keeps on schedule that we could be home in May! I'm trying not to get my hopes up, but I'm optimistic about it all.

Annabelle's feeding tube came out about 10 days ago, but she has been eating really well so we haven't put it back in. It is kind of crazy, actually! She has been ravenously hungry. The trick is getting her to eat more than 4 different things, but she has been doing better every day. I am very proud of her! When we checked in last Thursday she weighed 14.5 kilos (almost 32 lbs). That is the most she has ever weighed in her whole life! If she keeps this up she won't have to have a feeding tube again, ever. That would be awesome! I sure am getting much better sleep since I don't have to get up in the night to fill her food bag and roll her over every time she kinks the line and sets the alarm off. She is feeling REALLY good right now so we're just trying to keep her that way. She will have outpatient chemo this week and then she is scheduled for her next round next week.

The time has also come for Layla's surgery. She is SO excited to get to go to the hospital! That's what having a big sister with cancer will do for you. It will be a quick outpatient surgery so we should be home Friday afternoon. I am looking forward to having some time with just Layla. Too bad it's because she is having surgery!

Fun Days

Annabelle has had a rough past few weeks. She has been super emotional, not feeling great and just not herself, but we have had a great few days recently. It was so nice last weekend that the girls were able to play outside. They loved it and it did my heart so much good to see them playing and happy!

We have all been excited for my sister-in-law, Megan, to return from her mission to Peru, and the day finally came! We all loaded in a huge van and drove to the airport together. The girls (Annabelle, especially) were ecstatic about it and they loved being at the airport when she came down the escalators! Layla wasn't even a year old when Megan left but you'd think it was her long lost friend returning! They do happen to be a lot alike: curly hair, dog lovers, etc... She's barely been home for 24 hours but we're already loving having her back!

Last night brought a huge relief to me when Annabelle started swallowing her saliva!!!!!!!!!!! I was so happy and proud and overwhelmed with joy! Hopefully she will be over that issue, forever! (And yes, all of the exclamation points are necessary to express my emotion!!!) No more spit buckets, no more puzzle pieces falling in spit buckets, no more spilled spit buckets, no more cleaning out spit buckets. This is a big deal at the Yates house right now!

Tonight we are all heading to A Wishing Place for Annabelle to declare her wish! When she was first diagnosed and I was given a pamphlet about Make-A-Wish, I didn't say anything to her about it. It seemed like an odd concept to ask for something for free, but now seeing everything she has gone through, she deserves this chance to ask for whatever she wants. We are looking forward to a great night honoring Annabelle and sharing it with family.

Of course, not everything can always be so great in the world of cancer. Annabelle still isn't making platelet counts to start the next round of chemo so we are headed for at least 4 weeks between cycles. I hate this part about her treatment, but there's nothing I can do about it. I just want to be done and back home in Montana so it's a little depressing to think it could be another 5 months but that's how it goes. Also, Josh is leaving tomorrow to go home. It has been great having him here for the last couple of months but it is only going to be that much harder to see him leave tomorrow.

For now I'm just focusing on Annabelle's wish declaration tonight and how great it is going to be. I'll be sure to post all about the special night and let you all know what Annabelle wishes for!

Keep On Keepin' On

12 treatments down, 5 more to go!

We still have several more months worth of treatment, but somehow the number 5 sounds so good to me right now! I am definitely ready to be done, though. Ever since Annabelle was diagnosed I have counted on her being cancer free after completing her protocol. 17 cycles of chemo, 28 radiation treatments, actual numbers that I could count down. It's the thing that has kept me going and optimistic. To think beyond that was just too much to handle. It really has had to be one day, one treatment at a time. If for some reason Annabelle isn't clear at the end of her protocol, I honestly don't know what I'll do. I'd say I'll go crazy, but that's already happened. So I guess I'll probably cry for several days, maybe even a week, and then suck it up and keep going.

Last week I heard of a girl who had just found out her Ewing's had returned for the second time. Yes, this was going to be her THIRD round of fighting it. My heart sank, and I began crying. I know that Ewing's does recur very often, too often, but that was still hard to hear. I just don't know how I could do it that many times. I don't think I could do this all over again! And more than that, I don't want my sweet Annabelle Rae to have to go through this again...ever.

Good News!!!

I spoke with Dr Brockmeyer, the neurosurgeon, today and he had good news for me. He was very pleased with the way Annabelle's x-rays looked. She had a regular x-ray done on Wednesday and then on Friday she had a flex-x as well. The flex-x is just x-rays of her neck while it is flexed. Makes sense, right? So they take the pictures from the side as she tucks her chin to her chest and then as she tips her head back as far as she can.

He said her neck is stable at this point and he doesn't anticipate her needing any surgery. Best news ever! I honestly thought the best we could hear was that it was the same as before, but he said it actually looks better now. Despite all the destructive things we are doing to her body (chemo and radiation) her neck has managed to heal a bit! There is some sclerosis, or scarring, at the c-6 vertebra which shows up bright white on the x-ray. That is where the bone has tried to heal itself so it is very dense with calcium, which makes it show up whiter. So if anything else, it is actually stronger than before.

Of course there is no telling what the future will bring, but Dr Brockmeyer said he expects that it will get stronger and stronger with time. They will continue to follow it closely, but he said she is clear to do regular activities now. She can be a kid again....well, a kid with a paranoid mother that is!

Here are a few pictures from my phone that I took while she was having her x-rays done.

I didn't get any pictures of the CT scan because it turned a little traumatic. I forgot that they won't put the contrast through their central lines anymore, so she had to have an IV placed. After 20 minutes, they finally got one in. The actual poke was no big deal, it's just the build up to it that stresses her out. She likes to watch the needle go right in. Such a brave girl! Anyway, after all that trauma, I had to hold the suction in her mouth (she is back to not swallowing her saliva) and move in and out with the machine. It was highly entertaining for the techs, I'm sure! As a result, I had no hands free to take pictures with. :)

Results Are In

Sorry to all of those who have been waiting for me to post about Annabelle's scan results. It was a rough night so I am running on very little sleep and I'm not the happiest when I'm sleep deprived. Anyway, without further adieu...

CT of the chest was clear, meaning there has been no spread to that area. We didn't expect there to be, but still it's good to hear that it looks good!

The report from the x-ray of her neck doesn't report any significant change from her last one (August 12th, following induction chemo and before starting radiation) but I'm still waiting on official word. The neurosurgeon, Dr Brockmeyer, is supposed to be reviewing it so that's what we are waiting on. I have a million and one questions for him so I'm hoping to get him up here for a consult. I want to know if he thinks she will need surgery to fuse her spine or even possibly have the C6 vertebra removed and another bone grafted in its place. I want to know whether or not she can do "normal" activities throughout her life. I want to know if she can play basketball or if she has to avoid contact sports. I want to know if her neck is going to snap if she falls down. I want to know if she can jump on the trampoline. I want to know if I dare take the training wheels off her bike or if I should keep her in a padded room her whole life! Your neck is a pretty important part of the body so I NEED to know what I can allow her to safely do. My hope is that Dr Brockmeyer will surface tomorrow and put an end to my anxious waiting. I'll keep you posted...

Finally.....pictures!

Here are some pictures that I have been meaning to post. Some are from many months ago...oops!

Fishing at home in MT.

My barefoot girl!
The family in Yellowstone.
Annabelle had a meltdown in the car because she wanted Oreos. Much to her dismay, there aren't a lot of stops in Yellowstone Park where you can pick up Oreos!
After locating some Oreos...she was still a grouch.
But Layla was quite happy! (Have I mentioned lately how much I love this girl!?!)
Josh's attempt at a stern face about the whole ordeal.
No picture of me to show how I felt about it all. But if there was, I would be holding a Dr Pepper and a bottle of Excedrin!

She'll do anything she can think of to put off taking her meds!
Creepy/cheesy smile, but cute girl in her Christmas dress. She loved to twirl in it!
My brave, bald beauty in her Christmas dress.

Lights at Temple Square.

Some of our collected items to donate to the hospital.

We were also able to purchase a girly bike for the ICS unit.

Another load of presents ready to go!

The girls were super excited about heading to the hospital to deliver them!
Our biggest trip...
Super cool ice sculptures outside of PCMC.
I really, really want to thank all of those who donated gifts or money for us to be able to bring some cheer to others this holiday season. In addition to the gifts you saw in the pictures, we were able to contribute money to care packages for families in the PICU (Pediatric Intensive Care Unit) and other families of patients. The girls thoroughly enjoyed picking out, wrapping, and sorting the gifts and were even more excited to be giving them to others. I pray that each of you will be blessed for your kindness and generosity.